@Article{info:doi/10.2196/66352,
author="Recker, Kristin
and Silliman, Julia
and Gifford, Karolina
and Patel, Parth
and Santana, Lisgelia
and Hildenbrand, K. Aimee
and Palit, Shreela
and Wasserman, Rachel",
title="Virtual Reality Respiratory Biofeedback in an Outpatient Pediatric Pain Rehabilitation Program: Mixed Methods Pilot Study",
journal="JMIR Rehabil Assist Technol",
year="2025",
month="Apr",
day="14",
volume="12",
pages="e66352",
keywords="chronic pain",
keywords="adolescents",
keywords="feasibility",
keywords="respiratory biofeedback",
keywords="virtual reality",
keywords="VR",
keywords="applied VR respiratory biofeedback",
keywords="acceptability",
abstract="Background: Chronic pain in adolescents is a significant and growing concern, as it can have negative implications on physical and psychosocial development. Management can be complicated by the increasing risks associated with opioid misuse, highlighting the need for effective nonpharmacological interventions. Biofeedback is an empirically supported behavioral intervention for chronic pain that targets the self-regulation of physiological responses. Virtual reality (VR) is a novel delivery method for biofeedback that could serve as an engaging and effective platform for adolescents. Objective: The goal of this study was to assess the feasibility, acceptability, and preliminary effectiveness of integrating a VR-delivered respiratory biofeedback intervention into an outpatient pediatric pain rehabilitation program (PPRP) for adolescents with chronic pain. Methods: In this pilot study, we recruited 9 participants from those enrolled in the PPRP at Nemours Children's Hospital. Participants underwent 2 VR respiratory biofeedback sessions per week over a 4-week period using AppliedVR's ``RelieVRx'' program. Feasibility was defined as >60\% of eligible patients enrolling with at least 80\% of VR sessions completed. Acceptability was assessed via validated acceptability questionnaires, with high acceptability defined as an average acceptability rating score >3 on a 5-point Likert scale. Open-ended responses were analyzed via qualitative analysis. Preliminary effectiveness was assessed with questionnaires measuring the quality of life (Pediatric Quality of Life Inventory [PedsQL]) and level of pain interference in daily activities (Functional Disability Inventory) before and after participation in the pain program. Finally, heart rate (HR) and blood pressure (BP) were measured before and after each VR session. Results: Of 14 eligible PPRP patients, 9 (64\%) enrolled in the VR respiratory biofeedback study, and 7 (77\% of study participants) completed at least 80\% of biofeedback sessions. Participants reported high acceptability with average session ratings ranging from 3.89 to 4.16 on post-VR program questionnaires. Of 224 open-ended responses, participants reported changes in stress and somatic symptoms (ie, pain distraction and breathing regulation). There was a statistically significant increase in the average physical functioning score of the PedsQL among participants (P=.01) from pre- to postparticipation in the overall pain program. The cohort's average emotional functioning score of the PedsQL also increased, though this change was not statistically significant (P=.17). Participants' Functional Disability Inventory scores significantly decreased from an average of 25.1 to 11 from before to after the pain program (P=.002). There were no significant differences between pre- versus post-BP or HR for any session. However, decreased BP and HR were observed across most sessions. Conclusions: AppliedVR respiratory biofeedback demonstrated initial feasibility, acceptability, and preliminary effectiveness when implemented as part of a PRPP. This study underscores the need for future larger-scale studies analyzing the use of VR biofeedback in adolescent populations with chronic pain. ",
doi="10.2196/66352",
url="https://rehab.jmir.org/2025/1/e66352"
}


@Article{info:doi/10.2196/64618,
author="Allemang, Brooke
and Miatello, Ashleigh
and Browne, Mira
and Barwick, Melanie
and Maini, Pranshu
and Eszczuk, Joshua
and Pandit, Chetan
and Sadhra, Tandeep
and Forhan, Laura
and Bollegala, Natasha
and Fu, Nancy
and Lee, Kate
and Dekker, Emily
and Nistor, Irina
and Ahola Kohut, Sara
and Keefer, Laurie
and Griffiths, Marie Anne
and Walters, D. Thomas
and Micsinszki, Samantha
and Mack, R. David
and Lawrence, Sally
and Kroeker, I. Karen
and de Guzman, Jacqueline
and Tausif, Aalia
and Tersigni, Claudia
and Anthony, J. Samantha
and Benchimol, I. Eric",
title="Perspectives of Adolescents and Young Adults With Inflammatory Bowel Disease on a Biopsychosocial Transition Intervention: Qualitative Interview Study",
journal="JMIR Pediatr Parent",
year="2025",
month="Apr",
day="2",
volume="8",
pages="e64618",
keywords="gastroenterology",
keywords="inflammatory bowel disease",
keywords="biopsychosocial",
keywords="patient-oriented research",
keywords="transition to adult care",
keywords="qualitative methods",
keywords="young adults",
keywords="qualitative",
keywords="adolescents",
keywords="patient perspectives",
keywords="Crohn's disease",
abstract="Background: The transition from pediatric to adult health care marks a complex and pivotal process for adolescents and young adults with inflammatory bowel disease (IBD). This group requires support regarding disease self-management, skill development, and system navigation in preparation for transition. Evidence-based interventions are needed to promote optimal health and psychosocial outcomes for adolescents and young adults with IBD during this period. Objective: A qualitative study embedded within a randomized controlled trial was conducted to evaluate the perceived impact of a biopsychosocial transition intervention on the transition experiences of adolescents and young adults, their views on the intervention, and recommendations for future care. Methods: This patient-oriented research study used a qualitative descriptive design. Virtual semistructured interviews were held with 21 adolescents and young adults with IBD (16?18 y) enrolled in the randomized controlled trial (intervention arm n=11 and control arm n=10). Interviews were audio-recorded, transcribed, and analyzed using an inductive approach to reflexive thematic analysis. Five members of a Youth Advisory Panel with lived experience of IBD collaborated throughout data analysis, interpretation, and the presentation of findings. Results: We constructed three themes through our analysis: (1) making meaning of transitions in care; (2) perceptions and impact of the biopsychosocial transition intervention; and (3) considerations for future transition care, including the importance of individualized support. Conclusions: Our findings illustrate the importance of relationships and the impact of a biopsychosocial intervention on adolescents' and young adults' confidence, knowledge, and self-management skills during transition. The results, which indicate the criticality of tailoring transition supports according to adolescents' and young adults' preferences and characteristics, will be used to refine the biopsychosocial intervention before it can be scaled and spread. ",
doi="10.2196/64618",
url="https://pediatrics.jmir.org/2025/1/e64618"
}


@Article{info:doi/10.2196/67175,
author="Murphy, M. Karly
and Glock, Rachel
and Victorson, David
and Reddy, Madhu
and Birken, A. Sarah
and Salsman, M. John",
title="Co-Design of a Depression Self-Management Tool for Adolescent and Young Adult Cancer Survivors: User-Centered Design Approach",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="24",
volume="9",
pages="e67175",
keywords="adolescent and young adult",
keywords="cancer survivorship",
keywords="depressive symptoms",
keywords="self-management",
keywords="co-design workshops",
keywords="user-centered design",
keywords="thematic analysis",
keywords="intervention tailoring",
keywords="digital mental health",
keywords="evidence-based intervention",
keywords="digital tools",
keywords="psychosocial support",
abstract="Background: Adolescent and young adult (AYA) cancer survivors are more likely to experience elevated depressive symptoms than older survivors and healthy age-matched peers. Despite the elevated risk of depressive symptoms in AYA cancer survivors and the existence of evidence-based interventions to address depression, it is unclear whether AYA cancer survivors can access support services. Digital tools are a potential solution to overcoming barriers to AYA cancer survivors' unmet needs for psychosocial support, but they have not been tailored to the needs and preferences of this unique population. Objective: This study engaged AYA cancer survivors and their providers in the concept generation and ideation step of the user-centered design process through online co-design workshops. The goal was to generate concepts and ideas for a digital depression self-management tool tailored to AYA cancer survivors. Methods: We conducted 5 co-design workshops---4 with AYA cancer survivors and 1 with providers who serve them. Participants were asked to provide feedback on an existing digital mindfulness course using an ``I like, I wish, I wonder'' framework. Then, participants were asked ``How might we...'' questions focused on brainstorming ideas for how the digital tool might work. Participants brainstormed responses independently and then worked as a group to categorize and expand on their ideas. Co-design workshops were autotranscribed using Webex (Cisco) software. Transcripts underwent thematic analysis with additional context provided by the products created during the workshop. Results: Eight AYA cancer survivors (aged 15-37 years) and 4 providers (2 oncologists and 2 social workers) participated in co-design workshops. We identified 6 themes: barriers to engagement, desired content, preferences for content delivery, preferences for interface, features, and aspects to avoid. Each theme had 2-7 subthemes that we relied upon when making design decisions for the prototype. Conclusions: Co-design workshops provided critical insights that informed the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. Key takeaways that were integrated into prototype design include (1) using stories from other AYA cancer survivors to demonstrate concepts; (2) delivering content in brief lessons; and (3) using encouraging notifications, organizational tools, and reward systems to keep AYA cancer survivors engaged with the tool. Some of the themes identified in this study (eg, desired content and features) are consistent with known strategies for promoting user engagement and co-design work in other cancer survivors. However, this study extended previous research by identifying uniquely relevant strategies for tailoring to AYA cancer survivors, such as delivering content in brief sessions to overcome the time constraints AYA cancer survivors experience, providing opportunities for private expression, and maintaining an encouraging tone throughout the tool. These data were used to inform the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. ",
doi="10.2196/67175",
url="https://formative.jmir.org/2025/1/e67175",
url="http://www.ncbi.nlm.nih.gov/pubmed/40126551"
}


@Article{info:doi/10.2196/65826,
author="Ren, Zihan
and Chen, Yawen
and Li, Yufeng
and Fan, Panyu
and Liu, Zhao
and Shen, Biyu",
title="Digital Interventions for Patients With Juvenile Idiopathic Arthritis: Systematic Review and Meta-Analysis",
journal="JMIR Pediatr Parent",
year="2025",
month="Mar",
day="21",
volume="8",
pages="e65826",
keywords="juvenile idiopathic arthritis",
keywords="digital intervention",
keywords="application",
keywords="children health care",
keywords="pediatrics",
abstract="Background: Juvenile idiopathic arthritis (JIA) is a chronic rheumatic condition requiring long-term, multidisciplinary treatment, which consumes significant health care resources and family energy. This study aims to analyze the effectiveness of digital interventions on patient outcomes in individuals with JIA. Objective: This meta-analysis aimed to evaluate the impact of digital interventions on alleviating symptoms and improving overall well-being in children and adolescents with JIA. Methods: A systematic search of 5 databases identified randomized controlled trials assessing the impact of digital interventions on physiological and psychological outcomes in adolescents and children (average age ?19 y). Outcomes included pain, physical activity, health-related quality of life, self-efficacy, and disease-related issues. A total of 2 reviewers independently screened papers and extracted data on intervention functionalities and outcomes, assessing the risk of bias. A meta-analysis using a random-effects model synthesized the results. Results: The review included 11 studies involving 885 patients with JIA. Digital interventions included educational (eg, self-management training), therapeutic (eg, pain management), and behavioral (eg, promoting physical activity) approaches. These were delivered through websites, telephone consultations, video conferences, apps, and interactive games, with durations ranging from 8 to 24 weeks and no clear link observed between intervention length and outcomes. Compared with conventional control groups, digital interventions were significantly effective in alleviating pain (standardized mean difference [SMD] ?0.19, 95\% CI ?0.35 to ?0.04) and enhancing physical activity levels (SMD 0.37, 95\% CI 0.06-0.69). Marginal improvements in health-related quality of life, self-efficacy, and disease-related issues were observed, but these did not reach statistical significance (SMD ?0.04, 95\% CI ?0.19 to 0.11; SMD 0.05, 95\% CI ?0.11 to 0.20; and SMD 0.09, 95\% CI ?0.11 to 0.29, respectively). The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) approach rated the quality of evidence for pain, health-related quality of life, self-efficacy, and disease-related issues as moderate, while the evidence quality for physical activity was assessed as low. Conclusions: Digital interventions can alleviate pain and enhance physical activity in patients with JIA. However, given the limited sample size and high risk of bias in some studies, further high-quality research is needed to improve the treatment and management of JIA. Trial Registration: PROSPERO CRD42023471223; https://www.crd.york.ac.uk/PROSPERO/view/CRD42023471223 ",
doi="10.2196/65826",
url="https://pediatrics.jmir.org/2025/1/e65826"
}


@Article{info:doi/10.2196/65794,
author="Fedele, A. David
and Ray, M. Jessica
and Mallela, L. Jaya
and Bian, Jiang
and Chen, Aokun
and Qin, Xiao
and Salloum, G. Ramzi
and Kelly, Maria
and Gurka, J. Matthew
and Hollenbach, Jessica",
title="Development of a Clinical Decision Support Tool to Implement Asthma Management Guidelines in Pediatric Primary Care: Qualitative Study",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="18",
volume="9",
pages="e65794",
keywords="clinical decision support",
keywords="asthma",
keywords="primary care",
keywords="guidelines",
keywords="pediatric",
keywords="asthma care",
keywords="morbidity",
keywords="health information technology",
keywords="electronic health record",
keywords="EHR",
keywords="user-centered design",
keywords="inductive approach",
keywords="digital health",
keywords="health technology",
abstract="Background: There is a longstanding gap between national asthma guidelines and their implementation in primary care. Primary care providers (PCPs) endorse numerous provider and practice or clinic-related barriers to providing guidelines-based asthma care. To reduce asthma morbidity in primary care, PCPs need access to tools that facilitate adherence to national guidelines, which can be delivered at the point of care, are minimally burdensome, and fit within the clinic workflow. Clinical decision support (CDS) tools are health IT systems that can be housed in the electronic health record (EHR) system. Objective: This study aimed to follow user-centered design principles and describe the formative qualitative work with target stakeholders (ie, PCPs and IT professionals) to inform our design of an EHR-embedded CDS tool that adheres to recent, significant changes in asthma management guidelines. Methods: Purposive sampling was used to recruit three separate subgroups of professionals (n=15) between (1) PCPs with previous experience using a paper-based CDS tool for asthma management, (2) PCPs without previous experience using CDS tools for asthma management, and (3) health care IT professionals. The PCP interview guide focused on their practice, familiarity with national asthma guidelines, and how a CDS tool embedded in the EHR might help them provide guideline-based care. The health care IT professional guide included questions on the design and implementation processes of CDS tools into the EHR. Qualitative data were audio-recorded, transcribed, and then analyzed using an inductive approach to develop themes. Results: Themes were organized into 2 domains, current practice and CDS tool development. The themes that emerged from PCPs included descriptions of assessments conducted to make an asthma diagnosis, previous attempts or opportunities to implement updated national asthma guidelines, and how a CDS tool could be implemented using the EHR and fit into the current asthma management workflow. The themes that emerged from health care IT professionals included processes used to design CDS tools and strategies to collect evidence that indicated a tool's value to a practice and the broader health system. Conclusions: In this study, user-centered design principles were used to guide a qualitative study on perceived barriers and facilitators to a primary care--based, EHR-integrated asthma CDS tool. PCPs expressed their interest in adopting an asthma CDS tool that was low burden and efficient but could help them adhere to national asthma guidelines and improve clinic workflow. Similarly, health care IT professionals perceived an asthma CDS tool to be useful, if it adhered to EHR design standards. Implementation of a CDS tool to improve adherence of PCPs to recently updated national asthma guidelines could be beneficial in reducing pediatric asthma morbidity. ",
doi="10.2196/65794",
url="https://formative.jmir.org/2025/1/e65794"
}


@Article{info:doi/10.2196/56720,
author="Varela, Kimahri Luna
and Horton, Stephanie
and Abdelmoity, Ahmed
and Le Pichon, Jean-Baptiste
and Hoffman, A. Mark",
title="YouTube User Traffic to Paired Epilepsy Education Videos in English and Spanish: Comparative Study",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="13",
volume="9",
pages="e56720",
keywords="epilepsy",
keywords="patient education",
keywords="informatics",
keywords="social media",
keywords="biomedical research",
keywords="social determinants of health",
keywords="accessibility",
keywords="engagement",
keywords="comparative analysis",
keywords="clinical videos",
keywords="English",
keywords="Spanish",
keywords="neurological disorder",
keywords="YouTube",
keywords="bilingual",
keywords="audience engagement",
keywords="clinical knowledge",
abstract="Background: Effectively managing epilepsy in children necessitates the active engagement of parents, a factor that is reliant on their understanding of this neurological disorder. Widely available, high-quality, patient-focused, bilingual videos describing topics important for managing epilepsy are limited. YouTube Analytics is a helpful resource for gaining insights into how users of differing backgrounds consume video content. Objective: This study analyzes traffic to paired educational videos of English and Spanish versions of the same content. By examining the use patterns and preferences of individuals seeking information in different languages, we gained valuable insights into how language influences the use of clinical content. Methods: Physician experts created epilepsy management videos for the REACT (Reaching Out for Epilepsy in Adolescents and Children Through Telemedicine) YouTube channel about 17 subjects, with an English and Spanish version of each. The Children's Mercy Kansas City neurology clinic incorporated these into the department's educational process. YouTube Analytics enabled analysis of traffic patterns and video characteristics between September 2, 2021, and August 31, 2023. Results: The Spanish group had higher engagement and click-through rates. The English versions of all videos had 141,605 total impressions, while impressions for the Spanish versions totaled 156,027. The Spanish videos had 11,339 total views, while the English videos had 3366. The views per month were higher for the Spanish videos (mean 472, SD 292) compared to the English set (mean 140, SD 91; P<.001). The two groups also differed in search behavior and external traffic sources, with WhatsApp driving more traffic to the Spanish videos than the English versions (94 views compared to 1). The frequency of search terms used varied by language. For example, ``tonic clonic'' was the most frequent term (n=372) resulting in views for English videos, while ``tipos de convulsiones'' (types of convulsions) was the most common expression (n=798) resulting in views for Spanish videos. We noted increased monthly views for all videos after adding tags on YouTube. Before tagging, the mean number of views per month for the English-language group was 61 (SD 28), which increased to 220 (SD 53) post tagging. A similar trend can be observed in the Spanish-language group as well. Before tagging, the mean number of monthly views was 201 (SD 71), which increased to 743 (SD 144) after tagging. Conclusions: This study showed high traffic for Spanish video content related to epilepsy in a set of paired English/Spanish videos. This highlights the importance of bilingual health content and optimizing video content based on viewer preferences and search behavior. Understanding audience engagement patterns through YouTube Analytics can further enhance the dissemination of clinical video content to users seeking content in their primary language, and tagging videos can have a substantial impact on views. ",
doi="10.2196/56720",
url="https://formative.jmir.org/2025/1/e56720"
}


@Article{info:doi/10.2196/72675,
author="Yang, Alina",
title="Pediatric Hearts and Minds: Reimagining Health Education Through Play and Narrative",
journal="JMIR Pediatr Parent",
year="2025",
month="Mar",
day="13",
volume="8",
pages="e72675",
keywords="congenital heart disease",
keywords="children health literacy",
keywords="health education",
keywords="health education interventions",
keywords="patient-centered care",
keywords="design",
keywords="pediatric",
keywords="PRISMA",
doi="10.2196/72675",
url="https://pediatrics.jmir.org/2025/1/e72675"
}


@Article{info:doi/10.2196/64869,
author="Groninger, Hunter
and Arem, Hannah
and Ayangma, Lylian
and Gong, Lisa
and Zhou, Eric
and Greenberg, Daniel",
title="Development of a Voice-Activated Virtual Assistant to Improve Insomnia Among Young Adult Cancer Survivors: Mixed Methods Feasibility and Acceptability Study",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="10",
volume="9",
pages="e64869",
keywords="cancer",
keywords="survivor",
keywords="insomnia",
keywords="cognitive behavioral therapy",
keywords="technology",
keywords="app",
keywords="oncology",
keywords="mobile health",
keywords="artificial intelligence",
keywords="young adults",
keywords="sleep",
keywords="mHealth",
keywords="CBT",
keywords="voice-activated virtual assistant",
keywords="virtual assistants",
keywords="focus group",
keywords="qualitative research",
abstract="Background: Up to 75\% of young adult cancer survivors (YACS) experience chronic insomnia, negatively affecting physical and emotional health and overall quality of life. Cognitive behavioral therapy for insomnia (CBT-I) is a gold-standard intervention to address insomnia. To improve CBT-I access and treatment adherence, screen-based digital CBT-I platforms have been developed. However, even with these digital products, widespread uptake of CBT-I remains limited, and new strategies for CBT-I delivery are warranted. Objective: The objective of this study is to understand how YACS experience insomnia and how they might incorporate technology-delivered CBT-I into a daily routine and test the feasibility and acceptability of a novel screen-free voice-activated virtual assistant--delivered CBT-I prototype. Methods: Eligible participants---ages 18-39, living with a history of cancer (any type, any stage), self-reporting on average less sleep than National Sleep Foundation recommendations, and English-speaking---were recruited from a major urban cancer center, 2 regional oncology clinics, and 2 cancer survivorship support groups. We conducted 4 focus groups to understand the YACS experience of insomnia, their routine use of technology at home, particularly voice-activated virtual assistants such as Amazon Alexa, and input on how CBT-I might be delivered at home through a smart speaker system. We developed a prototype device to deliver key elements of CBT-I at home along with circadian lighting and monitoring of post-bedtime device use, collected YACS user perspectives on this prototype, and then conducted a single-arm feasibility and acceptability study. Results: In total, 26 YACS (6-7 participants per group) experiencing insomnia participated in focus groups to share experiences of insomnia during cancer survivorship and to provide input regarding a CBT-I prototype. Common triggers of insomnia included worry about disease management and progression, disease-related pain and other symptoms, choices regarding personal device use, and worry about the impact of poor sleep on daily functioning. In total, 12 participants completed device prototype testing, engaging with the prototype 94\% of the assigned times (twice daily for 14 days; meeting predetermined feasibility cutoff of engagement ?70\% of assigned times) and rating the prototype with an overall mean score of 5.43 on the Satisfaction subscale of the Usability, Satisfaction, and Ease of Use scale (range 4.42-7; exceeding the predetermined cutoff score for acceptability of 5.0). All participants completing the study reported they would be interested in using the prototype again and would recommend it to someone else with insomnia. Conclusions: YACS were highly engaged with our voice-activated virtual assistant--delivered CBT-I prototype and found it acceptable to use. Following final device development, future studies should evaluate the efficacy of this intervention among YACS. Trial Registration: ClinicalTrials.gov NCT05875129; https://clinicaltrials.gov/study/NCT05875129 ",
doi="10.2196/64869",
url="https://formative.jmir.org/2025/1/e64869"
}


@Article{info:doi/10.2196/65358,
author="Peramalaiah, Kanakapura Mrudula
and Parmar, Tejraj Sanjay
and Sepehri, Nariman
and Muthukumarana, Saman
and Kanitkar, Anuprita
and Hin, Kit-Fong Cherry
and Szturm, Joseph Tony",
title="Evaluation of a Game-Based Mechatronic Device for Rehabilitation of Hand-Arm Function in Children With Cerebral Palsy: Feasibility Randomized Controlled Trial",
journal="JMIR Rehabil Assist Technol",
year="2025",
month="Feb",
day="18",
volume="12",
pages="e65358",
keywords="cerebral palsy",
keywords="computer game--assisted rehabilitation",
keywords="manual dexterity",
keywords="repetitive task practice",
keywords="robotic manipulandum",
abstract="Background: Children with neurodevelopmental disorders, such as cerebral palsy (CP), often experience motor impairments in manual dexterity, which hinder daily tasks and social interactions. Traditional rehabilitation methods require repetitive task practice, which can be difficult for children to sustain due to low engagement. Game-based rehabilitation devices and robots offer a promising alternative by combining therapy with digital play, improving motivation and compliance. However, many systems fail to incorporate actual object manipulation, which is essential for motor learning through sensory feedback. To address this limitation, a low-cost, easy-to-use robotic manipulandum device (RMD) was developed. The RMD enables real-time object manipulation during gameplay while providing assistive force, allowing the practice of a wide range of manual dexterity skills beyond gross reaching. This system offers an engaging and effective rehabilitation approach to enhance hand function in children with CP. Objective: This study aimed to provide evidence for the feasibility and therapeutic value of the RMD game--based exercise program for children with CP. Methods: In total, 34 children with CP, aged 4 to 10 years, were randomly assigned to the experimental group (XG) or the control group (CG). The XG received a computer game--based exercise program using the RMD, focusing on object manipulation tasks, while the CG received task-specific training similar to constraint-induced movement therapy. Both groups received their respective therapy programs 3 times per week for 8 weeks. Semistructured interviews with parents and children, along with qualitative analysis, were conducted to evaluate their experiences with the exercise program. The following outcome measures were used: (1) the Peabody Developmental Motor Scale-2 (PDMS-2) grasping and visual-motor integration subtests and (2) the computer game--based upper extremity (CUE) assessment of manual dexterity. Results: No dropouts occurred during the 8-week program. Both groups showed significant improvements in the PDMS-2 subtests (P<.001) and the CUE assessment of manual dexterity, including success rates (tennis ball: P=.001; cone: P<.001; medicine ball: P=.001; and peanut ball: P<.001) and movement errors (tennis ball: P=.01; cone: P<.001; medicine ball: P=.04; and peanut ball: P<.001). The XG outperformed the CG, showing greater improvements in PDMS-2 grasping (P=.002) and visual-motor integration (P=.01). In the CUE assessment, the XG demonstrated higher success rates (medicine ball: P=.001 and peanut ball: P=.02) and fewer movement errors (cone: P<.001). Parents reported an increase in the children's independence in daily tasks. Conclusions: This study demonstrates the feasibility, acceptability, and positive outcomes of the RMD game--based exercise program for improving hand function in children with CP. The findings support further research and development of computer game--assisted rehabilitation technologies. Trial Registration: Clinical Trials Registry - India CTRI/2021/07/034903; https://ctri.nic.in/Clinicaltrials/pmaindet2.php?EncHid=NTc4ODU ",
doi="10.2196/65358",
url="https://rehab.jmir.org/2025/1/e65358",
url="http://www.ncbi.nlm.nih.gov/pubmed/39964707"
}


@Article{info:doi/10.2196/65107,
author="Kahhan, A. Nicole
and Fox, A. Larry
and Benson, Matthew
and Patton, R. Susana",
title="Implementing Diabetes Distress Screening in a Pediatric Endocrinology Clinic Using a Digital Health Platform: Quantitative Secondary Data Analysis",
journal="JMIR Pediatr Parent",
year="2025",
month="Feb",
day="6",
volume="8",
pages="e65107",
keywords="type 1 diabetes",
keywords="diabetes mellitus, type 1",
keywords="pediatric",
keywords="child",
keywords="children",
keywords="youth",
keywords="parents",
keywords="diabetes distress",
keywords="eHealth",
keywords="screening",
keywords="digital health",
keywords="diabetes",
keywords="diabetic",
keywords="type 1",
keywords="DM",
keywords="T1D",
keywords="endocrinology",
keywords="alert",
keywords="best practice alert",
keywords="BPA",
keywords="patient education",
abstract="Background: Type 1 diabetes (T1D) management requires following a complex and constant regimen relying on child or caregiver behaviors, skills, and knowledge. Psychological factors such as diabetes distress (DD), depression, and burnout are pertinent considerations in the treatment of pediatric T1D. Approximately 40\% of youth and 61\% of caregivers experience DD. Implementation of DD screening as part of clinical best practice is recommended and may facilitate treatment referral, perhaps leading to improved health or well-being for youth with T1D and their caregivers. By building on existing institutional infrastructure when available, screening via digital health platforms (applications, or ``apps'') may allow for timely screening of, and response to, DD. Objective: This work details the creation, implementation, and refinement of a process to screen for DD in youth and their caregivers in the context of routine T1D care using a digital health platform. Methods: DD screening was implemented in an outpatient endocrinology clinic over 1 year as part of a larger screen-to-treat trial for children aged 8?12.99 years and their caregivers. Validated measures were sent via digital health platform to be completed prior to the clinic visit. Results were initially reviewed manually, but a digital best practice alert (BPA) was later built to notify staff of elevated scores. Families experiencing DD received resources sent via the digital health platform. For this secondary analysis, child demographics and glycated hemoglobin A1c (HbA1c) were collected. Results: During the screening period, absolute completion rates were 36.78\% and 38.83\%, with adjusted screening rates at 52.02\% and 54.48\%, for children and caregivers, respectively. A total of 21 children (mean HbA1c 8.04\%, SD 1.39\%) and 26 caregivers (child mean HbA1c 8.04\%, SD 1.72\%) reported elevated DD. Prior to BPA development, resources were sent to all but 1 family. After BPA implementation, all families were sent resources. Conclusions: Early findings indicate that DD education, screening, and response can be integrated via digital platforms in a freestanding outpatient endocrinology clinic, thereby facilitating timely treatment referral and provision of resources for those identified with distress. Notably, in the observed 1-year screening period, screening rates were low, and barriers to implementation were identified. While some implementation challenges were iteratively addressed, there is a need for future quality improvement initiatives to improve screening rates and the identification of, or response to, DD in our pediatric patients and their families. Trial Registration: ClinicalTrials.gov NCT05268250; https://clinicaltrials.gov/study/NCT05268250 ",
doi="10.2196/65107",
url="https://pediatrics.jmir.org/2025/1/e65107"
}


@Article{info:doi/10.2196/63818,
author="Barbazi, Neda
and Shin, Youn Ji
and Hiremath, Gurumurthy
and Lauff, Anne Carlye",
title="Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy",
journal="JMIR Form Res",
year="2025",
month="Jan",
day="27",
volume="9",
pages="e63818",
keywords="assessment",
keywords="congenital heart disease",
keywords="children health literacy",
keywords="health education",
keywords="caregiving",
keywords="patient-centered care",
keywords="design",
keywords="qualitative pilot",
keywords="children health",
keywords="educational interventions",
abstract="Background: Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children's health literacy, parental educational burdens, and the efficiency of health care providers in delivering education. Objective: This qualitative pilot study aims to develop tailored assessment tools to evaluate educational needs and burdens among children with CHD, their parents, and health care providers. These assessments will inform the design of medical education toys to enhance health management and outcomes for pediatric patients with CHD and key stakeholders. Methods: Through stakeholder feedback from pediatric patients with CHD, parents, and health care providers, we developed three tailored assessments in two phases: (1) iterative development of the assessment tools and (2) pilot testing. In the first phase, we defined key concepts, conducted a literature review, and created initial drafts of the assessments. During the pilot-testing phase, 12 participants were recruited at the M Health Fairview Pediatric Specialty Clinic for Cardiology---Explorer in Minneapolis, Minnesota, United States. We gathered feedback using qualitative methods, including cognitive interviews such as think-aloud techniques, verbal probing, and observations of nonverbal cues. The data were analyzed to identify the strengths and weaknesses of each assessment item and areas for improvement. Results: The 12 participants included children with CHD (n=5), parents (n=4), and health care providers (n=3). The results showed the feasibility and effectiveness of the tailored assessments. Participants showed high levels of engagement and found the assessment items relevant to their education needs. Iterative revisions based on participant feedback improved the assessments' clarity, relevance, and engagement for all stakeholders, including children with CHD. Conclusions: This pilot study emphasizes the importance of iterative assessment development, focusing on multistakeholder engagement. The insights gained from the development process will guide the creation of tailored assessments and inform the development of child-led educational interventions for pediatric populations with CHD. ",
doi="10.2196/63818",
url="https://formative.jmir.org/2025/1/e63818"
}


@Article{info:doi/10.2196/63270,
author="Hagstr{\"o}m, Josefin
and Blease, Charlotte
and Harila, Arja
and L{\"a}hteenm{\"a}ki, P{\"a}ivi
and Scandurra, Isabella
and H{\"a}gglund, Maria",
title="Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study",
journal="JMIR Pediatr Parent",
year="2025",
month="Jan",
day="27",
volume="8",
pages="e63270",
keywords="health care professionals",
keywords="adolescent health",
keywords="patient-accessible electronic health record",
keywords="electronic health record",
keywords="patient portal",
keywords="survey",
keywords="eHealth",
keywords="interviews",
abstract="Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. Objective: This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. Methods: We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. Results: The survey population included 88 individuals (adolescents: n=31, 35\%; parents: n=57, 65\%). Interviews were completed by 8 (26\%) of the 31 adolescents and 17 (30\%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51\%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91\%) were critical of the access gap, and most of the adolescents (20/31, 65\%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents' and parents' views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). Conclusions: In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations. ",
doi="10.2196/63270",
url="https://pediatrics.jmir.org/2025/1/e63270"
}


@Article{info:doi/10.2196/66715,
author="Feusner, D. Jamie
and Farrell, R. Nicholas
and Nunez, Mia
and Lume, Nicholas
and MacDonald, W. Catherine
and McGrath, B. Patrick
and Trusky, Larry
and Smith, Stephen
and Rhode, Andreas",
title="Effectiveness of Video Teletherapy in Treating Obsessive-Compulsive Disorder in Children and Adolescents With Exposure and Response Prevention: Retrospective Longitudinal Observational Study",
journal="J Med Internet Res",
year="2025",
month="Jan",
day="27",
volume="27",
pages="e66715",
keywords="digital behavioral health",
keywords="youth",
keywords="cognitive-behavioral therapy",
keywords="exposure and response prevention",
keywords="CBT",
keywords="ERP",
keywords="OCD",
keywords="psychiatry",
keywords="clinical trial",
keywords="psychology",
keywords="video therapy",
keywords="teletherapy",
keywords="e-therapy",
keywords="e-counseling",
keywords="cyber-counseling",
keywords="adolescents",
keywords="adolescence",
keywords="obsessive-compulsive disorder",
keywords="retrospective study",
keywords="longitudinal study",
keywords="observational study",
keywords="ERP therapy",
abstract="Background: An effective primary treatment for obsessive-compulsive disorder (OCD) in children and adolescents as well as adults is exposure and response prevention (ERP), a form of intervention in the context of cognitive-behavioral therapy. Despite strong evidence supporting the efficacy and effectiveness of ERP from studies in research and real-world settings, its clinical use remains limited. This underuse is often attributed to access barriers such as the scarcity of properly trained therapists, geographical constraints, and costs. Some of these barriers may be addressed with virtual behavioral health, providing ERP for OCD through video teletherapy and supplemented by app-based therapeutic tools and messaging support between sessions. Studies of teletherapy ERP in adults with OCD have shown benefits in research and real-world settings in both small and large samples. However, studies of teletherapy ERP in children and adolescents thus far have been in small samples and limited to research rather than real-world settings. Objective: This study reports on the real-world effectiveness of teletherapy ERP for OCD in the largest sample (N=2173) of child and adolescent patients to date. Methods: Children and adolescents with OCD were treated with live, face-to-face video teletherapy sessions, with parent or caregiver involvement, using ERP. Assessments were conducted at baseline, after 7-11 weeks, and after 13-17 weeks. Additionally, longitudinal assessments of OCD symptoms were performed at weeks 18-30, 31-42, and 43-54. We analyzed longitudinal outcomes of OCD symptoms, depression, anxiety, and stress using linear mixed models. Results: Treatment resulted in a median 38.46\% (IQR 12.50\%-64.00\%) decrease in OCD symptoms at 13-17 weeks, and 53.4\% of youth met full response criteria at this point. Improvements were observed in all categories of starting symptom severity: mild (median 40.3\%, IQR 8.5\%-79.8\%), moderate (median 38.4\%, IQR 13.3\%-63.6\%), and severe (median 34.1\%, IQR 6.6\%-58.5\%). In addition, there were significant reductions in the severity of depression, anxiety, and stress symptoms. The median amount of therapist involvement was 13 (IQR 10.0-16.0) appointments and 11.5 (IQR 9.0-15.0) hours. Further, symptom improvements were maintained or improved upon in the longitudinal assessment periods of weeks 18-30, 31-42, and 43-54. Conclusions: These results show that remote ERP treatment, assisted by technology, can effectively improve both core OCD and related depression, anxiety, and stress symptoms in children and adolescents with OCD in a real-world setting. Notable outcomes were achieved in a relatively small amount of therapist time, demonstrating its efficiency. Demonstrating the usefulness of a delivery format that overcomes several traditional barriers to treatment, these findings have implications for widespread dissemination of accessible, evidence-based care for children and adolescents with OCD. ",
doi="10.2196/66715",
url="https://www.jmir.org/2025/1/e66715"
}


@Article{info:doi/10.2196/58301,
author="Ganzevoort, N. Ilse
and van der Veen, L. Adri{\"e}lla
and Alma, A. Manna
and Berger, Y. Marjolein
and Holtman, A. Gea",
title="Children's and Their Parents' Experiences With Home-Based Guided Hypnotherapy: Qualitative Study",
journal="JMIR Pediatr Parent",
year="2025",
month="Jan",
day="27",
volume="8",
pages="e58301",
keywords="qualitative study",
keywords="primary health care",
keywords="children",
keywords="functional abdominal pain",
keywords="irritable bowel syndrome",
keywords="hypnotherapy",
keywords="eHealth",
keywords="abdominal pain",
keywords="child",
keywords="parents",
keywords="accessibility",
keywords="questionnaire",
keywords="interviews",
keywords="thematic analysis",
keywords="home guided",
keywords="primary care",
keywords="mobile phone",
abstract="Background: Management of children with functional abdominal pain (FAP) or irritable bowel syndrome (IBS) is difficult in primary care. When education and reassurance do not alleviate symptoms, primary care physicians lack treatment options for children with FAP or IBS. Home-based guided hypnotherapy is a promising treatment because of its accessibility. To address feasibility, it is of utmost importance to take experiences from children and their parents into account. Objective: We aimed to explore children's and their parents' experiences with home-based guided hypnotherapy for children with FAP or IBS. Methods: This qualitative study used open-ended questions from a questionnaire and in-depth semistructured interviews with children and their parents who had a hypnotherapy intervention prescribed. The interviews were audio-recorded and transcribed verbatim. Data were collected and analyzed iteratively using thematic content analysis. Results: A total of 76 children were eligible, and we collected questionnaire data from 56 children. A total of 23 interviews were conducted with 10 children and 15 parents. Six themes emerged from questionnaire data and interviews: impression of the exercises, not for everyone, influence of perceived effect, integrating exercises in daily life, content and practicalities of the website, and customization to personal preferences. Children with FAP or IBS experienced home-based guided hypnotherapy and the exercises differently, ranging from boring to fun. From interviews with the parents, it emerged that hypnotherapy is not suitable for everyone; for example, when children are very young or have a low developmental level, cannot sit still, cannot surrender to the exercises, or are too energetic or stressed, it might be difficult to comply. Experiences were shaped by the influence of a perceived effect and to which extent children were able to integrate exercises in daily life. The content and practicalities of the website also influenced experiences, and hypnotherapy that is adaptable to personal preferences, including by appearance and content, would be highly appreciated. Conclusions: The children and parents experienced home-based guided hypnotherapy differently, ranging from boring to fun. Hypnotherapy might be difficult or boring for some children. The children enjoyed hypnotherapy when they liked the topic or story, felt positive effects, could easily integrate exercises in daily life, or enjoyed the website in general. The children's experiences and adherence can be further improved by adding short exercises and customizing hypnotherapy to their personal preferences on the website's appearance and content. This could increase effectiveness but must be studied further. Trial Registration: ClinicalTrials.gov NCT05636358; https://clinicaltrials.gov/study/NCT05636358 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2022-069653 ",
doi="10.2196/58301",
url="https://pediatrics.jmir.org/2025/1/e58301"
}


@Article{info:doi/10.2196/64814,
author="Barbazi, Neda
and Shin, Youn Ji
and Hiremath, Gurumurthy
and Lauff, Anne Carlye",
title="Exploring Health Educational Interventions for Children With Congenital Heart Disease: Scoping Review",
journal="JMIR Pediatr Parent",
year="2025",
month="Jan",
day="24",
volume="8",
pages="e64814",
keywords="congenital heart disease",
keywords="children health literacy",
keywords="health education",
keywords="health education interventions",
keywords="patient-centered care",
keywords="design",
keywords="pediatric",
keywords="PRISMA",
abstract="Background: Congenital heart disease (CHD) is the most common birth defect, affecting 40,000 births annually in the United States. Despite advances in medical care, CHD is often a chronic condition requiring continuous management and education. Effective care management depends on children's understanding of their condition. This highlights the need for targeted health educational interventions to enhance health literacy among children with CHD. Objective: This scoping review aims to map and explore existing health educational interventions for children with CHD. The review identifies the types of interventions, target populations, delivery methods, and assessed outcomes. The goal is to consolidate fragmented research, identify gaps, and establish future research agendas. Methods: Comprehensive searches were conducted in February 2024 using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) framework across multiple databases: APA PsycINFO, MedlinePlus via Ovid, Web of Science, ACM Digital Library, Scopus, and EBSCOhost (CINAHL Complete, CINAHL Ultimate, Health Source: Nursing/Academic Edition, and ERIC). The search covered health care, design, and human-computer interaction disciplines to capture the interdisciplinary nature of CHD health educational interventions. There was no predefined time limit due to the limited number of relevant studies. Eligible studies were in English, published in peer-reviewed journals, and focused on primary data about educational health interventions for children with CHD. We extracted and synthesized data using thematic analysis. Results: The review identified 11 studies: 9 randomized controlled trials and 2 observational studies. These used 6 educational strategies: 3D patient-specific models (n=3), habit formation interventions (n=2), empowerment-based health education programs (n=2), rehabilitation interventions (n=2), web-based portals (n=1), and videotape presentations (n=1). Interventions ranged from brief outpatient sessions to 1.5-year programs, with follow-up from none to 24 months. Studies aimed to improve coping, self-management, and knowledge for children with CHD and their families. The most frequently used assessment method was the independent samples t test (n=4) for pre- and postassessments, and all 11 studies used questionnaires, 8 of which incorporated qualitative feedback. The target participants for these interventions were children aged 13 years and older (n=3), parents (n=2), and children of various ages and their parents (n=6). Outcomes included improved children's health literacy, reduced parental burden, and increased health care provider efficiency. Conclusions: This review underscores the critical need for tailored educational interventions for children with CHD. Current research mainly focuses on adolescents and relies heavily on parental involvement, possibly overlooking the specific needs of younger children younger than 13 years of age. It is essential to develop engaging, age-appropriate interventions that actively involve children with CHD in their health care journey. Effective health educational interventions are crucial in empowering these young patients and improving their long-term health outcomes. ",
doi="10.2196/64814",
url="https://pediatrics.jmir.org/2025/1/e64814"
}


@Article{info:doi/10.2196/64265,
author="Beauchemin, P. Melissa
and Walker, Desiree
and Rosen, Allison
and Frazer, Maria
and Eisenberger, Meital
and Khurana, K. Rhea
and Bentlyewski, Edward
and Fedorko, Victoria
and Basch, H. Corey
and Hillyer, C. Grace",
title="Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study",
journal="JMIR Form Res",
year="2025",
month="Jan",
day="20",
volume="9",
pages="e64265",
keywords="young adults",
keywords="adolescent and young adult cancer",
keywords="cancer",
keywords="cancer treatment",
keywords="clinical trials",
keywords="clinical trial awareness",
keywords="clinical trial enrollment",
keywords="clinical trial knowledge",
keywords="clinical trial attitudes",
keywords="clinical trial enrollment barriers",
keywords="social media",
keywords="social media messages",
keywords="psychosocial",
keywords="United States",
abstract="Background: Low rates of adolescent and young adult (YA; aged 15-39 y) clinical trial enrollment (CTE), particularly among underserved groups, have resulted in a lack of standardized cancer treatments and follow-up guidelines for this group that may limit improvement in cancer treatments and survival outcomes for YAs. Objective: To understand and address unique barriers to CTE, we conducted focus groups to learn about informational, financial, and psychosocial needs of YAs surrounding CTE and identify strategies to address these barriers. Methods: We conducted 5 focus groups in 2023 among a diverse sample of YA patients from across the United States. An interview guide was developed collaboratively with YA advocates. Specifically, informational needs, financial concerns, and psychosocial issues were explored, and participants were probed to suggest strategies, especially those that leverage technology, to address these barriers. Sessions were audio recorded, transcribed, and coded using direct content analysis. Findings were synthesized through consensus discussions. Results: We confirmed the previously proposed thematic barriers regarding YA CTE and identified 9 subthemes: awareness, lack of clear and accessible CTE information, fear of the unknown, assumptions about costs, insurance coverage, navigating financial responsibilities, clinical trial discussions, clinical trial misconceptions, and desire for a support network. Throughout, YAs mentioned needs that might be addressed through informational outreach leveraging digital technology, the internet, and social media. Conclusions: This study expands knowledge of YA perceived barriers to CTE. These findings suggest that leveraging digital technology to disseminate reliable information to address needs may be an effective strategy to improve clinical trial participation in the YA population. ",
doi="10.2196/64265",
url="https://formative.jmir.org/2025/1/e64265"
}


@Article{info:doi/10.2196/49941,
author="Duncan, L. Christina
and Muther, F. Emily
and Lindwall, J. Jennifer
and Durkin, Kristine
and Ruvalcaba, Elizabeth
and Williamson, Eliza
and Ahrabi-Nejad, Corrine
and Bord, Evelyn
and Green, Angela
and Harrison, L. Megan
and Polineni, Deepika",
title="Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study",
journal="J Particip Med",
year="2025",
month="Jan",
day="20",
volume="17",
pages="e49941",
keywords="cystic fibrosis",
keywords="telecoaching",
keywords="self-management",
keywords="community engagement",
keywords="community partner",
keywords="intervention development",
abstract="Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management. Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population--centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it). Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input. Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention. Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions. ",
doi="10.2196/49941",
url="https://jopm.jmir.org/2025/1/e49941"
}


@Article{info:doi/10.2196/63384,
author="Zhu, Wenqing
and Gu, Shuneng
and Li, Jian
and Lin, Jin
and Hu, Chanling
and Liu, Rui",
title="Transformative Gamified Binocular Therapy for Unilateral Amblyopia in Young Children: Pilot Prospective Efficacy and Safety Study",
journal="JMIR Serious Games",
year="2025",
month="Jan",
day="16",
volume="13",
pages="e63384",
keywords="amblyopia",
keywords="binocular treatment",
keywords="digital therapy",
keywords="game",
keywords="stereoacuity",
keywords="visual acuity",
abstract="Background: Amblyopia is a common cause of visual impairment in children. Compliance with traditional treatments for amblyopia is challenging due to negative psychosocial impacts. Recent shifts in amblyopia treatment have moved from suppressing the dominant eye to enhancing binocular visual function. Binocular digital therapy has become a promising approach. Objective: The aim of this study was to evaluate the effects of binocular gamified digital therapy on visual acuity and stereoacuity (SA) in children with unilateral amblyopia. Methods: This pilot prospective study enrolled 11 children aged 4-6 years with unilateral amblyopia. Following at least 8 weeks of refractive correction, participants underwent binocular gamified digital therapy for 60 minutes per day, 5 days a week. The therapy used a roguelike shooting game delivered under binocular conditions through two independent channels with a real-time artificial intelligence visual engine. Assessments of distance visual acuity (DVA), near visual acuity (NVA), and SA were conducted at baseline and again at 4, 8, and 12 weeks. Results: At 12 weeks, the following significant improvements were noted: amblyopic eye DVA improved by 1.0 line (P=.01; d=0.77), binocular DVA improved by 0.7 lines (P=.006; d=1.00), and SA improved by 0.3 logarithm (log) arcseconds (P=.01; d=0.97). At 8 weeks, improvements included amblyopic eye DVA by 0.9 lines (P=.046; d=1.00) and SA by 0.28 log arcseconds (P=.02; d=0.90). No significant adverse events were observed, although one participant developed progressive esotropia. Conclusions: Binocular gamified digital therapy is effective and safe for improving visual outcomes in children aged 4-6 years with unilateral amblyopia. Trial Registration: Chinese Clinical Trial Registry ChiCTR2300072066; https://www.chictr.org.cn/showproj.html?proj=198625 ",
doi="10.2196/63384",
url="https://games.jmir.org/2025/1/e63384"
}


@Article{info:doi/10.2196/57652,
author="Iino, Haru
and Kizaki, Hayato
and Imai, Shungo
and Hori, Satoko",
title="Medication Management Initiatives Using Wearable Devices: Scoping Review",
journal="JMIR Hum Factors",
year="2024",
month="Nov",
day="27",
volume="11",
pages="e57652",
keywords="medication adherence",
keywords="scoping review",
keywords="database search",
keywords="integrated medication management",
keywords="drug",
keywords="pharmacy",
keywords="pharmacology",
keywords="pharmacotherapy",
keywords="pharmaceutics",
keywords="medication",
keywords="adherence",
keywords="wearable",
keywords="synthesis",
keywords="review methods",
keywords="digital health",
abstract="Background: Wearable devices (WDs) have evolved beyond simple fitness trackers to sophisticated health monitors capable of measuring vital signs, such as heart rate and blood oxygen levels. Their application in health care, particularly medication management, is an emerging field poised to significantly enhance patient adherence to treatment regimens. Despite their widespread use and increasing incorporation into clinical trials, a comprehensive review of WDs in terms of medication adherence has not been conducted. Objective: This study aimed to conduct a comprehensive scoping review to evaluate the impact of WDs on medication adherence across a variety of diseases, summarizing key research findings, outcomes, and challenges encountered. Methods: Adhering to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines, a structured search was conducted across MEDLINE, Web of Science, and Embase databases, covering the literature from January 1, 2010, to September 30, 2022. The search strategy was based on terms related to WDs and medication adherence, specifically focusing on empirical studies to ensure the inclusion of original research findings. Studies were selected based on their relevance to medication adherence, usage of WDs in detecting medication-taking actions, and their role in integrated medication management systems. Results: We screened 657 articles and identified 18 articles. The identified studies demonstrated the diverse applications of WDs in enhancing medication adherence across diseases such as Parkinson disease, diabetes, and cardiovascular conditions. The geographical distribution and publication years of these studies indicate a growing interest in this research area. The studies were divided into three types: (1) studies reporting a correlation between data from WDs or their usage and medication adherence or drug usage as outcomes, (2) studies using WDs to detect the act of medication-taking itself, and (3) studies proposing an integrated medication management system that uses WDs in managing medication. Conclusions: WDs are increasingly being recognized for their potential to enhance medication management and adherence. This review underscores the need for further empirical research to validate the effectiveness of WDs in real-life settings and explore their use in predicting adherence based on activity rhythms and activities. Despite technological advancements, challenges remain regarding the integration of WDs into routine clinical practice. Future research should focus on leveraging the comprehensive data provided by WDs to develop personalized medication management strategies that can improve patient outcomes. ",
doi="10.2196/57652",
url="https://humanfactors.jmir.org/2024/1/e57652"
}


@Article{info:doi/10.2196/56556,
author="Li, ZhiRu
and Lu, FangYan
and Wu, JingYun
and Bao, RuiJie
and Rao, YuXin
and Yang, Yun
and Wang, Huafen",
title="Usability and Effectiveness of eHealth and mHealth Interventions That Support Self-Management and Health Care Transition in Adolescents and Young Adults With Chronic Disease: Systematic Review",
journal="J Med Internet Res",
year="2024",
month="Nov",
day="26",
volume="26",
pages="e56556",
keywords="eHealth",
keywords="mHealth",
keywords="mobile health",
keywords="chronic disease",
keywords="healthcare transition",
keywords="self-management",
keywords="adolescents",
keywords="young adults",
keywords="chronic illness",
keywords="systematic review",
keywords="digital health",
keywords="health education",
keywords="social support",
keywords="symptom tracking",
keywords="monitoring",
keywords="effectiveness",
abstract="Background: With advances in medical technologies, more children with chronic diseases are now living on into adulthood. The development of proficient self-management skills is essential for adolescents and young adults to transition from pediatric to adult health care services. An innovative way to improve the current care model and foster self-management skills could be through eHealth or mHealth (mobile health) interventions, in particular, when considering the rising ownership of digital technology by adolescents and young adults. Objective: This systematic review aimed to evaluate the features, acceptability, usability, engagement, and intervention efficacy of eHealth and mHealth interventions that support self-management and health care transition in adolescents and young adults with chronic disease. Methods: This review followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) reporting guidelines (registration number CRD42023378355). We systematically searched the MEDLINE complete, Embase, Cochrane Library, CINAHL complete, and ProQuest Health \& Medical complete. We considered only articles published in or since 2019, as we aimed to extend the data collected by 2 previous systematic reviews. Results: A total of 16,752 studies were screened. After removing duplicates, 14,507 studies were excluded based on the title and abstract. Ultimately, 22 studies were included. The interventions ranged from simple text messages to complex interventions involving web-based games and engagement of health care providers, which were summarized into 6 themes: medication monitoring and reminders, symptom tracking and monitoring, management goal setting, knowledge education and self-management skills training, incentives and reinforcement, and communication. Most adolescents and young adults felt the eHealth and mHealth interventions were feasible, as they were convenient, easy to use, and accessible in the context of helping manage their health. However, user engagement was variable and presented a gradual decline in youth engagement with these apps over time. Barriers that prevent user engagement are diverse, such as time-consuming video uploads, noncontinuous access to a phone, reading literacy levels, language, and false impressions. Moreover, adolescents and young adults had different preferred styles of message delivery and functions, especially the engaging elements, disease-specific information, and opportunities to communicate with peers, health care providers, and app teams. Conclusions: There remains limited data about the effectiveness of eHealth and mHealth interventions facilitating the self-management and health care transition of adolescents and young adults with chronic diseases. Based on the available evidence, they were receptive to and interested in receiving information and managing their health using mobile apps or websites. Considering adolescents and young adults had different preferred styles of message delivery and features, to improve user engagement and provide focused interventions, it would be better to involve them early in the design process to identify their specific needs, as well as collaborate with health care providers and app teams to obtain suggestions. ",
doi="10.2196/56556",
url="https://www.jmir.org/2024/1/e56556",
url="http://www.ncbi.nlm.nih.gov/pubmed/39589770"
}


@Article{info:doi/10.2196/54679,
author="Keicher, Franca
and Thomann, Julia
and Erlenwein, Jana
and Schottdorf, Mara
and Reiter, Lennart Nils
and Scholz-Schw{\"a}rzler, Patricia Nadine
and Vogel, Barbara
and Warlitz, Cordula
and Stojanov, Silvia
and Augustin, Silvia
and Goldbrunner, Lola
and Schanz, Linda
and Dodel, Veronika
and Zipper, Charlotte
and Schiweck, Nicole
and Jaeschke, Robert
and Saramandic, Milica
and Wiejaczka, Karolina
and Eberhartinger, Maria
and Dettmer, Kristina
and Hattesohl, Ricardo Daniel Bruno
and Englbrecht, Stephanie
and Behrends, Uta
and Spiegler, Juliane",
title="Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study",
journal="JMIR Res Protoc",
year="2024",
month="Nov",
day="21",
volume="13",
pages="e54679",
keywords="patient education",
keywords="ME/CFS",
keywords="children",
keywords="adolescents",
keywords="ModuS",
keywords="parents",
keywords="teachers",
keywords="siblings",
keywords="training",
abstract="Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presents significant challenges for affected children and adolescents, their social environment, and treating physicians, due to its profound impact on quality of life and the lack of causal therapeutic approaches. One crucial aspect of care that has been missing for these patients is comprehensive education for both them and their social circles. Objective: This study protocol aims to outline the goals, study design, execution, and evaluation of the subproject within the BAYNET FOR ME/CFS project. The focus is on developing online education programs for children and adolescents with ME/CFS, as well as for their parents, siblings, and school staff. These programs are designed to improve independent disease management, increase knowledge, and promote interaction with other affected individuals. Methods: In phase I, the group-based online education programs were developed by a multidisciplinary team based on the ModuS concept created by the Competence Network for Patient Education (KomPaS). These programs were then piloted and finalized. Phase II involved recruiting participants and implementing the finalized programs. Given the restricted physical and cognitive capacities of the affected individuals, the patient education programs were exclusively designed in a digital format to facilitate participation. In phase III, the programs will be evaluated for acceptance, completeness, and participant satisfaction. The qualitative assessment will focus on individual expectations and benefits derived from the training. Phase IV will further assess the programs in terms of improvements in disease knowledge, health-related quality of life, life satisfaction, and family burden. Results: The programs were developed, piloted, and finalized during phase I, which ran from December 2022 to May 2023. The pilot phase, from March to May 2023, led to adaptations in the program concept. In total, 8 patients and their parents, 5 siblings, and 59 school staff participated in the piloting. Adjustments were made to the format, content, duration, and schedule to better meet the needs of the affected individuals and their social circles. In phase II, participant recruitment for the patient education program took place from January to July 2023. The study successfully recruited 24 young patients with ME/CFS and their parents, along with 8 siblings and 51 school staff. Two program blocks for patients and parents and 2-3 blocks for siblings and school staff commenced in May 2023 and were completed within the same year. Phase III began after phase II and involves the evaluation of the programs, with the process expected to conclude by the end of 2024. Phase IV, planned for 2025-2026, will involve the rollout of the program to 150 children and their caretakers. This phase will focus on evaluating disease knowledge, health-related quality of life, life satisfaction, and family burden, as well as include longitudinal assessments. Conclusions: The data aim to support the development of a comprehensive, interprofessional care model for children and adolescents with ME/CFS. International Registered Report Identifier (IRRID): DERR1-10.2196/54679 ",
doi="10.2196/54679",
url="https://www.researchprotocols.org/2024/1/e54679",
url="http://www.ncbi.nlm.nih.gov/pubmed/39570662"
}


@Article{info:doi/10.2196/58892,
author="Chan, Zhong Pin
and Jin, Eric
and Jansson, Miia
and Chew, Jocelyn Han Shi",
title="AI-Based Noninvasive Blood Glucose Monitoring: Scoping Review",
journal="J Med Internet Res",
year="2024",
month="Nov",
day="19",
volume="26",
pages="e58892",
keywords="artificial intelligence",
keywords="blood glucose",
keywords="diabetes",
keywords="noninvasive",
keywords="self-monitoring",
keywords="machine learning",
keywords="scoping review",
keywords="monitoring",
keywords="management",
keywords="health informatics",
keywords="deep learning",
keywords="accuracy",
keywords="heterogeneity",
keywords="mobile phone",
abstract="Background: Current blood glucose monitoring (BGM) methods are often invasive and require repetitive pricking of a finger to obtain blood samples, predisposing individuals to pain, discomfort, and infection. Noninvasive blood glucose monitoring (NIBGM) is ideal for minimizing discomfort, reducing the risk of infection, and increasing convenience. Objective: This review aimed to map the use cases of artificial intelligence (AI) in NIBGM. Methods: A systematic scoping review was conducted according to the Arksey O'Malley five-step framework. Eight electronic databases (CINAHL, Embase, PubMed, Web of Science, Scopus, The Cochrane-Central Library, ACM Digital Library, and IEEE Xplore) were searched from inception until February 8, 2023. Study selection was conducted by 2 independent reviewers, descriptive analysis was conducted, and findings were presented narratively. Study characteristics (author, country, type of publication, study design, population characteristics, mean age, types of noninvasive techniques used, and application, as well as characteristics of the BGM systems) were extracted independently and cross-checked by 2 investigators. Methodological quality appraisal was conducted using the Checklist for assessment of medical AI. Results: A total of 33 papers were included, representing studies from Asia, the United States, Europe, the Middle East, and Africa published between 2005 and 2023. Most studies used optical techniques (n=19, 58\%) to estimate blood glucose levels (n=27, 82\%). Others used electrochemical sensors (n=4), imaging (n=2), mixed techniques (n=2), and tissue impedance (n=1). Accuracy ranged from 35.56\% to 94.23\% and Clarke error grid (A+B) ranged from 86.91\% to 100\%. The most popular machine learning algorithm used was random forest (n=10) and the most popular deep learning model was the artificial neural network (n=6). The mean overall checklist for assessment of medical AI score on the included papers was 33.5 (SD 3.09), suggesting an average of medium quality. The studies reviewed demonstrate that some AI techniques can accurately predict glucose levels from noninvasive sources while enhancing comfort and ease of use for patients. However, the overall range of accuracy was wide due to the heterogeneity of models and input data. Conclusions: Efforts are needed to standardize and regulate the use of AI technologies in BGM, as well as develop consensus guidelines and protocols to ensure the quality and safety of AI-assisted monitoring systems. The use of AI for NIBGM is a promising area of research that has the potential to revolutionize diabetes management. ",
doi="10.2196/58892",
url="https://www.jmir.org/2024/1/e58892"
}


@Article{info:doi/10.2196/51753,
author="Le Roux, Enora
and Ursino, Moreno
and Milovanovic, Ivana
and Picq, Paul
and Haignere, Jeremie
and Rault, Gilles
and Pougheon Bertrand, Dominique
and Alberti, Corinne",
title="Home-Based Connected Devices Combined With Statistical Process Control for the Early Detection of Respiratory Exacerbations by Patients With Cystic Fibrosis: Pilot Interventional Study With a Pre-Post Design",
journal="JMIR Form Res",
year="2024",
month="Oct",
day="28",
volume="8",
pages="e51753",
keywords="connected devices",
keywords="cystic fibrosis",
keywords="patient education",
keywords="self-management",
keywords="medical device",
keywords="home monitoring",
keywords="remote monitoring",
keywords="statistical process control",
keywords="connected health",
keywords="alerts",
abstract="Background: Currently, patients with cystic fibrosis do not routinely monitor their respiratory function at home. Objective: This study aims to assess the clinical validity of using different connected health devices at home to measure 5 physiological parameters to help prevent exacerbations on a personalized basis from the perspective of patient empowerment. Methods: A multicenter interventional pilot study including 36 patients was conducted. Statistical process control---the cumulative sum control chart (CUSUM)---was used with connected health device measures with the objective of sending patients alerts at a relevant time in order to identify their individual risk of exacerbations. Associated patient education was delivered. Quantitative and qualitative data were collected. Results: One-half (18/36) of the patients completed the protocol through the end of the study. During the 12-month intervention, 6162 measures were collected with connected health devices, 387 alerts were sent, and 33 exacerbations were reported. The precision of alerts to detect exacerbations was weak for all parameters, which may be partly related to the low compliance of patients with the measurements. However, a decrease in the median number of exacerbations from 12 months before the study to after the 12-month intervention was observed for patients. Conclusions: The use of connected health devices associated with statistical process control showed that it was not acceptable for all patients, especially because of the burden related to measurements. However, the results suggest that it may be promising, after adaptations, for early identification and better management of exacerbations. Trial Registration: ClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/study/NCT03304028 ",
doi="10.2196/51753",
url="https://formative.jmir.org/2024/1/e51753"
}


@Article{info:doi/10.2196/64216,
author="Taylor, Marin
and Bondi, Christina Bianca
and Andrade, F. Brendan
and Au-Young, H. Stephanie
and Chau, Vann
and Danguecan, Ashley
and D{\'e}sir{\'e}, Naddley
and Guo, Ting
and Ostojic-Aitkens, Dragana
and Wade, Shari
and Miller, Steven
and Williams, Samantha Tricia",
title="Stepped-Care Web-Based Parent Support Following Congenital Heart Disease: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="4",
volume="13",
pages="e64216",
keywords="congenital heart disease",
keywords="neurodevelopmental outcomes",
keywords="web-based mental health care",
keywords="stepped care",
keywords="positive parenting",
keywords="family well-being",
keywords="mental health",
keywords="I-InTERACT-North",
abstract="Background: Early neurodevelopmental risks, compounded with traumatic medical experiences, contribute to emotional and behavioral challenges in as many as 1 in 2 children with congenital heart disease (CHD). Parents report a strong need for supports; yet, there remains a lack of accessible, evidence-based behavioral interventions available for children with CHD and their families. I-InTERACT-North is a web-based stepped-care mental health program designed to support family well-being and reduce behavioral concerns through positive parenting for children with early medical complexity. In previous pilot studies, the program was effective in increasing positive parenting skills and decreasing child behavior problems, with high parent-reported acceptability. This paper presents the protocol for the first randomized study of stepped-care parent support for families of children with CHD. Objective: This study will involve a single-site, 2-arm, single-blind randomized controlled trial to evaluate (1) the feasibility and acceptability of a web-based stepped-care parent support program (I-InTERACT-North) and (2) the effectiveness of the program in enhancing positive parenting skills and reducing behavioral concerns among families of children with CHD. Methods: Families will be randomized (1:1) to either receive treatment or continue with care as usual for 12 months. Randomization will be stratified by child's sex assigned at birth and baseline parent-reported child behavior intensity. Primary outcomes include positive parenting skills and child behavior at baseline, 3 months, 6 months, and 12 months. Secondary outcomes include parental mental health, quality of life, service usage, and feasibility including program reach and adherence. A sample size of 244 families will provide >95\% power to detect an effect size of d=0.64. Based on attrition data from pilot studies, a target of 382 families will be enrolled. Parent reports of acceptability, adoption, and suggested adaptability of the program will be examined using cross-case thematic analyses. Primary efficacy analysis will be conducted using an intent-to-treat approach. Generalized estimating equations will be used to examine changes in positive parenting. Child behavior, quality of life, and parent mental health will be tested with repeated-measures analyses. Additional sensitivity and replication analyses will also be carried out. Results: Recruitment began in February 2024, and recruitment and follow-up will continue until January 2029. We anticipate results in late 2029. Conclusions: This study aims to test the effectiveness of I-InTERACT-North web-based stepped-care parent support in improving positive parenting skills and reducing child behavior problems in families of children with CHD compared with a care as usual control group. Results will inform future clinical implementation and expansion of this program among families of children with early medical conditions. Trial Registration: ClinicalTrials.gov NCT06075251; https://clinicaltrials.gov/study/NCT06075251 International Registered Report Identifier (IRRID): DERR1-10.2196/64216 ",
doi="10.2196/64216",
url="https://www.researchprotocols.org/2024/1/e64216",
url="http://www.ncbi.nlm.nih.gov/pubmed/39365658"
}


@Article{info:doi/10.2196/58101,
author="Skeens, A. Micah
and Jackson, I. Daniel
and Sutherland-Foggio, S. Malcolm
and Sezgin, Emre",
title="mHealth Apps in the Digital Marketplace for Pediatric Patients With Cancer: Systematic Search and Analysis",
journal="JMIR Pediatr Parent",
year="2024",
month="Oct",
day="1",
volume="7",
pages="e58101",
keywords="mHealth",
keywords="mobile health",
keywords="mobile application",
keywords="mobile apps",
keywords="digital health",
keywords="digital technology",
keywords="digital intervention",
keywords="smartphones",
keywords="cancer",
keywords="oncology",
keywords="pediatric cancer",
keywords="paediatric cancer",
keywords="pediatric oncology",
keywords="paediatric oncology",
keywords="systematic analysis",
keywords="systematic analyses",
keywords="review",
keywords="mobile phone",
abstract="Background: The substantial increase in smartphone ownership has led to a rise in mobile health (mHealth) app use. Developing tailored features through mHealth apps creates a pathway to address the health care needs of pediatric patients with cancer and their families who have complex care needs. However, few apps are designed specifically to integrate with pediatric cancer care. Objective: This study reports a systematic search and analysis of mHealth apps available on the Apple App (iOS) and Google Play (Android) stores designed for pediatric cancer through a list of features that serve (1) patients, (2) caregivers, or (3) both audiences. Methods: Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, we reviewed apps for pediatric patients with cancer and caregivers available as of January 30, 2024. We searched the Apple App and Google Play stores with a list of keyword combinations focusing on pediatric cancer care. The inclusion criteria were (1) specifically apps targeted toward pediatric patients with cancer, their families, or both; (2) available in either app store; and (3) available in English. Apps were assessed using the Mobile Application Rating Scale (MARS). The MARS is a quality assessment for mHealth apps, including components of engagement, functionality, aesthetics, and informational quality (5-point Likert scale items---1: low and 5: high quality). Results: In total, 22 apps were identified and 17 of those apps were available on both platforms. The most popular features (n=12) were resource sharing, symptom tracking, reminders, care team connections, journaling, community support, medication tracking, data visualizations, and appointment tracking. Features and interfaces were designed for caregivers (n=9) more frequently than the patients (n=7) while a subset of apps created options for both users (n=6). A total of 16 apps received positive reviews (mean 4.4, SD 0.59; Min=3.1, Max=5.0). A small subset (n=3) achieved over 5000 downloads; however, the majority (n=15) had fewer than 500. More than half (n=12) of the apps were not available in English. Apps requested access to a range of device functionalities to operate (mean 2.72, SD 3.13; Min=0, Max=10). Out of 22, a total of 17 apps were publicly accessible. The mean MARS scores for the apps ranged from 1.71 (SD 0.75) to 4.33 (SD 0.82). Overall, apps scored high on functionality (mean 3.72, SD 0.54) but low on engagement (mean 3.02, SD 0.93). Conclusions: Our review highlights the promising yet underdeveloped potential of mHealth apps in pediatric oncology care, underscoring the need for more inclusive, comprehensive, and integrative digital health solutions. Future developments should actively involve key stakeholders from the pediatric oncology community, including patients, families, and health care professionals, to ensure the apps meet specific needs while addressing linguistic and cultural barriers. ",
doi="10.2196/58101",
url="https://pediatrics.jmir.org/2024/1/e58101"
}


@Article{info:doi/10.2196/56816,
author="Butler, Sonia
and Sculley, Dean
and Santos, Derek
and Giron{\`e}s, Xavier
and Singh-Grewal, Davinder
and Coda, Andrea",
title="Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study",
journal="JMIR Pediatr Parent",
year="2024",
month="Sep",
day="17",
volume="7",
pages="e56816",
keywords="phone app",
keywords="smart watch",
keywords="juvenile idiopathic arthritis",
keywords="pain",
keywords="medication adherence",
keywords="physical activity",
keywords="integrated care",
keywords="medication",
keywords="development",
keywords="usability study",
keywords="chronic inflammatory disorder",
keywords="children",
keywords="child",
keywords="usability",
keywords="survey",
keywords="thematic analysis",
keywords="gamification",
keywords="modules",
keywords="web-based platform",
keywords="support",
abstract="Background: Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disorder with no cure. Most children are prescribed several medications aimed at controlling disease activity, managing symptoms, and reducing pain. Physical activity is also encouraged to retain musculoskeletal function. The primary determinants of treatment success are maintaining long-term adherence, ongoing monitoring by a pediatric rheumatologist, and involvement of an interdisciplinary team. To support these goals, a new digital intervention was developed, InteractiveClinics, which aimed to prompt children to take their medications, report pain levels, and increase their physical activity. Objective: This study aims to evaluate the usability of InteractiveClinics among children with JIA. Methods: As part of this pediatric cross-sectional study, 12 children were asked to wear a smartwatch for 2 weeks, which was synchronized to the InteractiveClinics phone app and web-based platform. Personalized notifications were sent daily to the watch and phone, to prompt and record medication adherence and pain level assessment. Physical activity was automatically recorded by the watch. At the end of the study, all children and parents completed a postintervention survey. Written comments were also encouraged to gain further feedback. Descriptive statistics were used to summarize the survey results, and all qualitative data underwent thematic analysis. Results: Twelve children aged 10 to 18 years (mean 14.2, SD 3.1 years; female: n=8, 66.7\%) and 1 parent for each child (n=12; female: n=8, 66.7\%) were enrolled in the study. Based on the highest and lowest agreement areas of the survey, most children and parents liked the smartwatch and web-based platform; they found it easy to learn and simple to use. They were also satisfied with the pain and physical activity module. However, usability and acceptability barriers that hindered uptake were identified in the phone app and medication module. Children required a unique in-app experience, and their suggestive improvements included more personalization within the app; simplification by removing all links not relevant to antirheumatic medications; flexibility in response times; improved conferment through gamification; additional comment fields for the input of more data, such as medication side effects or pain-related symptoms; more detailed graphical illustrations of the physical activity module, including a breakdown of metrics; and importantly, interconnections between modules, because medication adherence, pain levels, and physical activity can each influence the other. They were, overall, improving usefulness for children and parents. Conclusions: The usability of InteractiveClinics was positive. Children and parents liked the watch and web-based platform and were satisfied with the pain and physical activity module. However, children wanted a unique in-app experience through more personalization, simplification, flexibility, conferment, comment fields, graphical illustrations, a breakdown of metrics, and interconnections. Certainly, inclusions are needed to promote user adoption and advancement of new validated digital health interventions in pediatric rheumatology, to support the delivery of integrated care. Trial Registration: ANZCTR ACTRN12616000665437; https://tinyurl.com/mwwfje8r ",
doi="10.2196/56816",
url="https://pediatrics.jmir.org/2024/1/e56816"
}


@Article{info:doi/10.2196/60860,
author="Toulany, Alene
and Khodyakov, Dmitry
and Mooney, Sarah
and Stromquist, Lisa
and Bailey, Katherine
and Barber, EH Claire
and Batthish, Michelle
and Cleverley, Kristin
and Dimitropoulos, Gina
and Gorter, Willem Jan
and Grahovac, Danijela
and Grimes, Ruth
and Guttman, Beverly
and H{\'e}bert, L. Mich{\`e}le
and John, Tomisin
and Lo, Lisha
and Luong, Dorothy
and MacGregor, Laura
and Mukerji, Geetha
and Pidduck, Jacklynn
and Senthilnathan, Vjura
and Shulman, Rayzel
and Trbovich, Patricia
and Munce, EP Sarah",
title="Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study",
journal="JMIR Res Protoc",
year="2024",
month="Sep",
day="10",
volume="13",
pages="e60860",
keywords="transition to adult care",
keywords="adolescent health",
keywords="chronic conditions",
keywords="quality indicators",
keywords="consensus",
keywords="caregivers",
keywords="adolescent",
keywords="stakeholder engagement",
keywords="patient engagement",
keywords="Delphi",
abstract="Background: The transition from pediatric to adult care poses a significant health system--level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations. Objective: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions. Methods: Using an integrated knowledge translation (iKT) approach, a panel comprising youth, caregivers, interdisciplinary health care providers, and health system leaders will be established to collaborate with our research team to ensure that the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n=160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition; and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multistage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels. Results: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated. Conclusions: This study will produce quality indicators to evaluate and inform action equitably to improve transition from pediatric to adult care for youth and their families in Canada. International Registered Report Identifier (IRRID): PRR1-10.2196/60860 ",
doi="10.2196/60860",
url="https://www.researchprotocols.org/2024/1/e60860",
url="http://www.ncbi.nlm.nih.gov/pubmed/38889353"
}


@Article{info:doi/10.2196/60621,
author="Werner, E. Nicole
and Morgen, Makenzie
and Kooiman, Sophie
and Jolliff, Anna
and Warner, Gemma
and Feinstein, James
and Chui, Michelle
and Katz, Barbara
and Storhoff, Brittany
and Sodergren, Kristan
and Coller, Ryan",
title="Effectiveness of a Mobile App (Meds@HOME) to Improve Medication Safety for Children With Medical Complexity: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Sep",
day="9",
volume="13",
pages="e60621",
keywords="medication safety",
keywords="children with medical complexity",
keywords="caregiving",
keywords="polypharmacy",
keywords="medication management",
abstract="Background: This study will pilot-test the mobile app, Medication Safety @HOME---Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers' medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. Objective: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. Methods: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children's Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC's caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG's rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. Results: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62\%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. Conclusions: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. Trial Registration: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590 International Registered Report Identifier (IRRID): DERR1-10.2196/60621 ",
doi="10.2196/60621",
url="https://www.researchprotocols.org/2024/1/e60621"
}


@Article{info:doi/10.2196/53512,
author="Hermsen, Sander
and Tump, Danielle
and Wentink, Eva
and Duijvestein, Marjolijn",
title="Investigating Patient Perspectives on Using eHealth Technologies for the Self-Management of Inflammatory Bowel Disease: Mixed Methods Study",
journal="J Med Internet Res",
year="2024",
month="Sep",
day="6",
volume="26",
pages="e53512",
keywords="information and communication technology",
keywords="ICT",
keywords="self-management",
keywords="inflammatory bowel disease",
keywords="IBD",
keywords="smart toilet seat",
keywords="mobile phone",
abstract="Background: Inflammatory bowel disease (IBD) poses significant challenges for patients, requiring continuous monitoring and self-management to improve quality of life. Objective: This study aims to investigate the viewpoints of individuals living with IBD on the use of information and communication technology (ICT) for the self-management of their condition, with a particular focus on the concept of a ``smart'' toilet seat as an example of ICT for IBD self-management. Methods: We conducted an analysis of questionnaire responses obtained from 724 participants. They were encouraged to share their use cases and identify any perceived barriers associated with ICT adoption for managing their condition. To assess their responses, we used descriptive quantitative analysis, summative content analysis, and thematic qualitative analysis. We combined these results in an epistemic network analysis to look for meaningful patterns in the responses. Results: Of the 724 participants, more than half (n=405, 55.9\%) were already using various forms of ICT for IBD self-management. The primary factor influencing their use of ICT was their affinity for interacting with technology. Distinct differences emerged between individuals who were using ICT and those who were not, particularly regarding their perceived use cases and concerns. Conclusions: This study provides valuable insights into the perspectives of individuals with IBD on the use of ICT for self-management. To facilitate wider adoption, addressing privacy concerns, ensuring data security, and establishing reliable ICT integration will be critical. ",
doi="10.2196/53512",
url="https://www.jmir.org/2024/1/e53512",
url="http://www.ncbi.nlm.nih.gov/pubmed/39240663"
}


@Article{info:doi/10.2196/45858,
author="Necaise, Aaron
and Amon, Jean Mary",
title="Peer Support for Chronic Pain in Online Health Communities: Quantitative Study on the Dynamics of Social Interactions in a Chronic Pain Forum",
journal="J Med Internet Res",
year="2024",
month="Sep",
day="5",
volume="26",
pages="e45858",
keywords="social media",
keywords="chronic pain",
keywords="peer support",
keywords="sentiment analysis",
keywords="wavelet analysis",
keywords="nonlinear dynamics",
keywords="growth curve modeling",
keywords="online health communities",
keywords="affective synchrony",
abstract="Background: Peer support for chronic pain is increasingly taking place on social media via social networking communities. Several theories on the development and maintenance of chronic pain highlight how rumination, catastrophizing, and negative social interactions can contribute to poor health outcomes. However, little is known regarding the role web-based health discussions play in the development of negative versus positive health attitudes relevant to chronic pain. Objective: This study aims to investigate how participation in online peer-to-peer support communities influenced pain expressions by examining how the sentiment of user language evolved in response to peer interactions. Methods: We collected the comment histories of 199 randomly sampled Reddit (Reddit, Inc) users who were active in a popular peer-to-peer chronic pain support community over 10 years. A total of 2 separate natural language processing methods were compared to calculate the sentiment of user comments on the forum (N=73,876). We then modeled the trajectories of users' language sentiment using mixed-effects growth curve modeling and measured the degree to which users affectively synchronized with their peers using bivariate wavelet analysis. Results: In comparison to a shuffled baseline, we found evidence that users entrained their language sentiment to match the language of community members they interacted with (t198=4.02; P<.001; Cohen d=0.40). This synchrony was most apparent in low-frequency sentiment changes unfolding over hundreds of interactions as opposed to reactionary changes occurring from comment to comment (F2,198=17.70; P<.001). We also observed a significant trend in sentiment across all users ($\beta$=--.02; P=.003), with users increasingly using more negative language as they continued to interact with the community. Notably, there was a significant interaction between affective synchrony and community tenure ($\beta$=.02; P=.02), such that greater affective synchrony was associated with negative sentiment trajectories among short-term users and positive sentiment trajectories among long-term users. Conclusions: Our results are consistent with the social communication model of pain, which describes how social interactions can influence the expression of pain symptoms. The difference in long-term versus short-term affective synchrony observed between community members suggests a process of emotional coregulation and social learning. Participating in health discussions on Reddit appears to be associated with both negative and positive changes in sentiment depending on how individual users interacted with their peers. Thus, in addition to characterizing the sentiment dynamics existing within online chronic pain communities, our work provides insight into the potential benefits and drawbacks of relying on support communities organized on social media platforms. ",
doi="10.2196/45858",
url="https://www.jmir.org/2024/1/e45858",
url="http://www.ncbi.nlm.nih.gov/pubmed/39235845"
}


@Article{info:doi/10.2196/49692,
author="Sarasmita, Ary Made
and Lee, Ya-Han
and Chan, Fan-Ying
and Chen, Hsiang-Yin",
title="Digital Serious Games to Promote Behavior Change in Children With Chronic Diseases: Scoping Review and Development of a Self-Management Learning Framework",
journal="J Med Internet Res",
year="2024",
month="Aug",
day="19",
volume="26",
pages="e49692",
keywords="children",
keywords="chronic disease",
keywords="digital game",
keywords="patient education",
keywords="serious game",
abstract="Background: Digital serious games (SGs) have rapidly become a promising strategy for entertainment-based health education; however, developing SGs for children with chronic diseases remains a challenge. Objective: In this study, we attempted to provide an updated scope of understanding of the development and evaluation of SG educational tools and develop a framework for SG education development to promote self-management activities and behavior change in children with chronic diseases. Methods: This study consists of a knowledge base and an analytical base. This study followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. To build the knowledge base, 5 stages of research were developed, including refining the review question (stage 1), searching for studies (stage 2), selecting relevant studies (stage 3), charting the information (stage 4), and collating the results (stage 5). Eligible studies that developed SG prototypes and evaluated SG education for children with chronic diseases were searched for in PubMed, Embase, Google Scholar, and peer-reviewed journals. In the analytical base, the context-mechanism-output approach and game taxonomy were used to analyze relevant behavioral theories and essential game elements. Game taxonomy included social features, presentation, narrative and identity, rewards and punishment, and manipulation and control. A total of 2 researchers selected the domains for the included behavioral theories and game elements. The intended SG framework was finalized by assembling SG fragments. Those SG fragments were appropriately reintegrated to visualize a new SG framework. Results: This scoping review summarized data from 16 randomized controlled trials that evaluated SG education for children with chronic diseases and 14 studies on SG frameworks. It showed that self-determination theory was the most commonly used behavioral theory (9/30, 30\%). Game elements included feedback, visual and audio designs, characters, narratives, rewards, challenges, competitions, goals, levels, rules, and tasks. In total, 3 phases of a digital SG framework are proposed in this review: requirements (phase 1), design and development (phase 2), and evaluation (phase 3). A total of 6 steps are described: exploring SG requirements (step 1), identifying target users (step 2), designing an SG prototype (step 3), building the SG prototype (step 4), evaluating the SG prototype (step 5), and marketing and monitoring the use of the SG prototype (step 6). Safety recommendations to use digital SG-based education for children in the post--COVID-19 era were also made. Conclusions: This review summarizes the fundamental behavioral theories and game elements of the available literature to establish a new theory-driven step-by-step framework. It can support game designers, clinicians, and educators in designing, developing, and evaluating digital, SG-based educational tools to increase self-management activities and promote behavior change in children with chronic diseases. ",
doi="10.2196/49692",
url="https://www.jmir.org/2024/1/e49692",
url="http://www.ncbi.nlm.nih.gov/pubmed/39158952"
}


@Article{info:doi/10.2196/56045,
author="Saboor, Sundas
and Medina, Adrian
and Marciano, Laura",
title="Application of Positive Psychology in Digital Interventions for Children, Adolescents, and Young Adults: Systematic Review and Meta-Analysis of Controlled Trials",
journal="JMIR Ment Health",
year="2024",
month="Aug",
day="14",
volume="11",
pages="e56045",
keywords="positive psychology",
keywords="digital interventions",
keywords="ill-being",
keywords="well-being",
keywords="systematic review",
keywords="meta-analysis",
keywords="smartphone",
keywords="mobile phone",
abstract="Background: The rising prevalence of mental health issues in children, adolescents, and young adults has become an escalating public health issue, impacting approximately 10\%-20\% of young people on a global scale. Positive psychology interventions (PPIs) can act as powerful mental health promotion tools to reach wide-ranging audiences that might otherwise be challenging to access. This increased access would enable prevention of mental disorders and promotion of widespread well-being by enhancing self-efficacy, thereby supporting the achievement of tangible objectives. Objective: We aimed to conduct a comprehensive synthesis of all randomized controlled trials and controlled trials involving children, adolescents, and young adults, encompassing both clinical and nonclinical populations, to comprehensively evaluate the effectiveness of digital PPIs in this age group. Methods: After a literature search in 9 electronic databases until January 12, 2023, and gray literature until April 2023, we carried out a systematic review of 35 articles, of which 18 (51\%) provided data for the meta-analysis. We included randomized controlled trials and controlled trials mainly based on web-based, digital, or smartphone-based interventions using a positive psychology framework as the main component. Studies included participants with a mean age of <35 years. Outcomes of PPIs were classified into indicators of well-being (compassion, life satisfaction, optimism, happiness, resilience, emotion regulation and emotion awareness, hope, mindfulness, purpose, quality of life, gratitude, empathy, forgiveness, motivation, and kindness) and ill-being (depression, anxiety, stress, loneliness, and burnout). PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used for the selection of studies and data extraction. Quality assessment was performed following the CONSORT (Consolidated Standards of Reporting Trials) guidelines. Results: For well-being outcomes, meta-analytic results showed that PPIs augmented the feeling of purpose, gratitude, and hope (Hedges g=0.555), compassion (Hedges g=0.447), positive coping behaviors (Hedges g=0.421), body image--related outcomes (Hedges g=0.238), and positive mindset predisposition (Hedges g=0.304). For ill-being outcomes, PPIs reduced cognitive biases (Hedges g=--0.637), negative emotions and mood (Hedges g=--0.369), and stress levels (Hedges g=--0.342). Of note, larger effect sizes were found when a waiting list control group was considered versus a digital control group. A funnel plot showed no publication bias. Meta-regression analyses showed that PPIs tended to show a larger effect size on well-being outcomes in studies including young adults, whereas no specific effect was found for ill-being outcomes. Conclusions: Revised evidence suggests that PPIs benefit young people's well-being and mitigate ill-being symptoms. Digital platforms offer a unique way to address their mental health challenges, although not without limitations. Future research should explore how they work for the needs of the young population and further examine what specific PPIs or combination of interventions is most beneficial with respect to other digital control groups. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42023420092; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=420092 ",
doi="10.2196/56045",
url="https://mental.jmir.org/2024/1/e56045"
}


@Article{info:doi/10.2196/55123,
author="Keikhosrokiani, Pantea
and Polus, Manria
and Guardado Medina, Sharon
and Isomursu, Minna",
title="The Effectiveness of Medical Adherence Mobile Health Solutions for Individuals With Epilepsy: Protocol for a Systematic Review",
journal="JMIR Res Protoc",
year="2024",
month="Aug",
day="6",
volume="13",
pages="e55123",
keywords="digital care pathway",
keywords="epilepsy",
keywords="mHealth",
keywords="mobile health",
keywords="effectiveness",
keywords="systematic review",
keywords="management",
keywords="medical adherence",
keywords="patient outcomes",
keywords="digital health",
keywords="design",
keywords="eHealth solutions",
keywords="health care professionals",
abstract="Background: Epilepsy requires continuous management and treatment to optimize patient outcomes. The advancement of digital health has led to the development of various mobile health (mHealth) tools designed to enhance treatment adherence among individuals with epilepsy. These solutions offer crucial support through features such as reminders, educational resources, personalized feedback, assistance with managing costs, shared decision-making, and access to supportive communities. To design effective medication adherence mHealth solutions, it is essential to evaluate the effectiveness of existing mHealth tools, understand the unique circumstances of different patients, and identify the roles of health care professionals within the digital care pathway. Existing studies on epilepsy primarily focus on self-management, whereas the effectiveness and usability of medical adherence mHealth solutions often remain overlooked. Furthermore, the involvement of health care professionals in digital care pathways for epilepsy as well as the impact of adherence mHealth solutions on the patient experience have not been adequately explored. Objective: This study aims to assess the effectiveness of current mHealth solutions designed to improve medical adherence among patients with epilepsy. Furthermore, the study will examine the experiences of patients using mHealth solutions for maintaining medical adherence in epilepsy care. Finally, this review intends to determine the roles of health care professionals within mHealth systems aimed at supporting adherence to medication among patients with epilepsy. Methods: A systematic literature review has been selected as the appropriate method to address the research questions, adhering to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The inclusion and exclusion criteria have been carefully selected, and both qualitative and quantitative analyses will be used to analyze the results. The expected results will mainly focus on the comparison, classification, and analysis of the effectiveness of current medical adherence mHealth tools. Moreover, the patient experiences using available medical adherence mHealth tools for epilepsy will be assessed. Finally, the role of health care professionals in the epilepsy digital care pathway will be explored, with emphasis on medical adherence. Results: The initial search, full-text screening, and data extraction have been carried out. Thirty-three papers were included in the final stage of the review. The study is expected to be completed by October 2024. Conclusions: To enhance the digital care pathway for epilepsy, a medical adherence mHealth solution should be personalized, manage medications, include an alarm system, track seizures, support consultations, and offer updated treatment plans. This study aims to understand how findings from the research questions can improve mHealth solutions for individuals with epilepsy. Insights from this research on the effectiveness of current mHealth adherence solutions will provide guidance for developing future mHealth systems, making them more efficient and effective in managing epilepsy. Trial Registration: PROSPERO CRD4202347400; https://tinyurl.com/48mfx22e International Registered Report Identifier (IRRID): DERR1-10.2196/55123 ",
doi="10.2196/55123",
url="https://www.researchprotocols.org/2024/1/e55123"
}


@Article{info:doi/10.2196/50527,
author="Mazzocato, Pamela
and Luckhaus, Linnea Jamie
and Malmqvist Castillo, Moa
and Burnett, Johan
and Hager, Andreas
and Oates, Gabriela
and Wannheden, Carolina
and Savage, Carl",
title="A Patient-Driven Mobile Health Innovation in Cystic Fibrosis Care: Comparative Cross-Case Study",
journal="J Med Internet Res",
year="2024",
month="Jul",
day="31",
volume="26",
pages="e50527",
keywords="chronic illness",
keywords="implementation",
keywords="adoption",
keywords="spread",
keywords="patient-driven innovation",
keywords="mHealth",
keywords="mobile health",
keywords="innovation",
keywords="health care provider",
keywords="motivation",
keywords="interdependency",
keywords="adaptability",
abstract="Background: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective. Objective: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics. Methods: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9\%, in Sweden; n=1, 11.1\%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis. Results: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16\%-23\%), middle (25\%-47\%), or high (58\%-95\%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability. Conclusions: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers' perspectives on what generates value is essential. ",
doi="10.2196/50527",
url="https://www.jmir.org/2024/1/e50527",
url="http://www.ncbi.nlm.nih.gov/pubmed/39083342"
}


@Article{info:doi/10.2196/57950,
author="Lau, Nancy
and Palermo, M. Tonya
and Zhou, Chuan
and Badillo, Isabel
and Hong, Shannon
and Aalfs, Homer
and Yi-Frazier, P. Joyce
and McCauley, Elizabeth
and Chow, J. Eric
and Weiner, J. Bryan
and Ben-Zeev, Dror
and Rosenberg, R. Abby",
title="Mobile App Promoting Resilience in Stress Management for Adolescents and Young Adults With Cancer: Protocol for a Pilot Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Jul",
day="30",
volume="13",
pages="e57950",
keywords="adolescents",
keywords="young adult",
keywords="cancer",
keywords="mHealth",
keywords="psychosocial intervention",
keywords="stress management",
keywords="coping",
keywords="resilience",
keywords="health-related quality of life",
keywords="randomized controlled trial",
keywords="mobile phone",
abstract="Background: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers. Objective: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM). Promoting Resilience in Stress Management is an evidence-based intervention developed in collaboration with AYAs, based on stress and coping theory, resilience theory, and evidence-based coping strategies. We hypothesized that mPRISM would be feasible, acceptable, and appropriate. Methods: This is a parallel, 2-arm, single-site pilot RCT with a waitlist control design. The study will recruit 80 AYAs with cancer from a clinic. Eligible AYAs are aged 12 to 25 years, within 12 months of a new cancer diagnosis, receiving chemotherapy or radiation therapy, speak, read, or write in English, and are cognitively able to participate in study procedures. Recruitment by clinical research coordinators will occur remotely by phone, video, or text. Participants will be randomized to psychosocial usual care (UC) alone or UC plus mPRISM for an 8-week intervention period, and will remain unblinded to study condition. Enrolled participants will complete surveys at baseline before randomization, 8 weeks, and 3-month follow-up. Using a waitlist design, the UC arm will receive mPRISM upon completion of 3-month follow-up surveys. Those in the UC arm will complete 2 additional measurement points at immediate posttreatment and 3 months later. The primary outcomes of interest are feasibility, defined as ?60\% enrollment and ?70\% retention (ie, percentage of participants who completed the study), and ``feasibility, acceptability, and appropriateness'' as defined by cut-off scores ?4/5 on 3 brief validated implementation outcome measures (feasibility of implementation measure, acceptability of intervention measure [AIM], intervention appropriateness measure [IAM]). We will apply top-box scoring for the implementation measures. Exploratory outcomes of interest include patient-reported health-related quality of life, resilience, distress, anxiety, depression, pain, and sleep. We will conduct an intention-to-treat analysis to compare the outcomes of the mPRISM arm versus the control arm with covariate-adjusted regression models. We will summarize individual digital usage metrics using descriptive statistics. Results: Since September 2023, we have enrolled 20 participants and recruitment is ongoing. Conclusions: Although our previous work suggests AYAs with cancer are interested in mHealth psychosocial interventions, such interventions have not yet been sufficiently evaluated or implemented among AYA oncology patients. mPRISM may serve as a potential mHealth intervention to fill this gap. In this study, we will test the feasibility, acceptability, and preliminary efficacy of mPRISM. This work will inform future larger-scale RCTs powered for efficacy outcomes. Trial Registration: ClinicalTrials.gov NCT05842902; https://clinicaltrials.gov/study/NCT05842902 International Registered Report Identifier (IRRID): DERR1-10.2196/57950 ",
doi="10.2196/57950",
url="https://www.researchprotocols.org/2024/1/e57950"
}


@Article{info:doi/10.2196/51491,
author="Shetty, B. Vinutha
and Fried, Leanne
and Roby, C. Heather
and Soon, K. Wayne H.
and Nguyen, Rebecca
and Ong, Arthur
and Jaimangal, Mohinder
and Francis, Jacinta
and Paramalingam, Nirubasini
and Cross, Donna
and Davis, Elizabeth",
title="Development of a Novel Mobile Health App to Empower Young People With Type 1 Diabetes to Exercise Safely: Co-Design Approach",
journal="JMIR Diabetes",
year="2024",
month="Jul",
day="30",
volume="9",
pages="e51491",
keywords="Mobile health application",
keywords="Exercise",
keywords="fitness",
keywords="physical activity",
keywords="design",
keywords="co-design",
keywords="focus group",
keywords="focus groups",
keywords="acT1ve",
keywords="Type 1 diabetes",
keywords="Young people",
keywords="Blood glucose level",
keywords="diabetic",
keywords="diabetes",
keywords="young",
keywords="youth",
keywords="type 1",
keywords="prototype",
keywords="develop",
keywords="development",
keywords="mHealth",
keywords="mobile health",
keywords="app",
keywords="apps",
keywords="applications",
keywords="user-centered design",
keywords="mobile phone",
abstract="Background: Blood glucose management around exercise is challenging for youth with type 1 diabetes (T1D). Previous research has indicated interventions including decision-support aids to better support youth to effectively contextualize blood glucose results and take appropriate action to optimize glucose levels during and after exercise. Mobile health (mHealth) apps help deliver health behavior interventions to youth with T1D, given the use of technology for glucose monitoring, insulin dosing, and carbohydrate counting. Objective: We aimed to develop a novel prototype mHealth app to support exercise management among youth with T1D, detail the application of a co-design process and design thinking principles to inform app design and development, and identify app content and functionality that youth with T1D need to meet their physical activity goals. Methods: A co-design approach with a user-centered design thinking framework was used to develop a prototype mHealth app ``acT1ve'' during the 18-month design process (March 2018 to September 2019). To better understand and respond to the challenges among youth with diabetes when physically active, 10 focus groups were conducted with youth aged 13-25 years with T1D and parents of youth with T1D. Thereafter, we conducted participatory design workshops with youth to identify key app features that would support individual needs when physically active. These features were incorporated into a wireframe, which was critically reviewed by participants. A beta version of ``acT1ve'' was built in iOS and android operating systems, which underwent critical review by end users, clinicians, researchers, experts in exercise and T1D, and app designers. Results: Sixty youth with T1D, 14 parents, 6 researchers, and 10 clinicians were engaged in the development of ``acT1ve.'' acT1ve included key features identified by youth, which would support their individual needs when physically active. It provided advice on carbohydrates and insulin during exercise, information on hypoglycemia treatment, pre- and postexercise advice, and an educational food guide regarding exercise management. ``acT1ve'' contained an exercise advisor algorithm comprising 240 pathways developed by experts in diabetes and exercise research. Based on participant input during exercise, acT1ve provided personalized insulin and carbohydrate advice for exercise lasting up to 60 minutes. It also contains other features including an activity log, which displays a complete record of the end users' activities and associated exercise advice provided by the app's algorithm for later reference, and regular reminder notifications for end users to check or monitor their glucose levels. Conclusions: The co-design approach and the practical application of the user-centered design thinking framework were successfully applied in developing ``acT1ve.'' The design thinking processes allowed youth with T1D to identify app features that would support them to be physically active, and particularly enabled the delivery of individualized advice. Furthermore, app development has been described in detail to help guide others embarking on a similar project. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12619001414101; https://tinyurl.com/mu9jvn2d ",
doi="10.2196/51491",
url="https://diabetes.jmir.org/2024/1/e51491",
url="http://www.ncbi.nlm.nih.gov/pubmed/39078700"
}


@Article{info:doi/10.2196/54322,
author="Ladune, Raphaelle
and Hayotte, Meggy
and Vuillemin, Anne
and d'Arripe-Longueville, Fabienne",
title="Development of a Web App to Enhance Physical Activity in People With Cystic Fibrosis: Co-Design and Acceptability Evaluation by Patients and Health Professionals",
journal="JMIR Form Res",
year="2024",
month="Jul",
day="30",
volume="8",
pages="e54322",
keywords="cystic fibrosis",
keywords="decisional balance",
keywords="digital app",
keywords="acceptability",
keywords="physical activity",
keywords="mobile phone",
abstract="Background: Cystic fibrosis (CF) is a genetic disease affecting the respiratory and digestive systems, with recent treatment advances improving life expectancy. However, many people with CF lack adequate physical activity (PA). PA can enhance lung function and quality of life, but barriers exist. The Cystic Fibrosis Decisional Balance of Physical Activity questionnaire assesses the decisional balance for PA in adults with CF, but it is not optimal for clinical use. A digital app might overcome this limitation by improving the efficiency of administration, interpretation of results, and communication between patients and health care professionals. Objective: This paper presents the development process and reports on the acceptability of a web app designed to measure and monitor the decisional balance for PA in people with CF. Methods: This study comprised two stages: (1) the co-design of a digital app and (2) the evaluation of its acceptability among health care professionals and people with CF. A participatory approach engaged stakeholders in the app's creation. The app's acceptability, based on factors outlined in the Unified Theory of Acceptance and Use of Technology 2, is vital for its successful adoption. Participants volunteered, gave informed consent, and were aged >18 years and fluent in French. Data collection was performed through qualitative interviews, video presentations, surveys, and individual semistructured interviews, followed by quantitative and qualitative data analyses. Results: In total, 11 health care professionals, 6 people with CF, and 5 researchers were involved in the co-design phase. Results of this phase led to the coconstruction of an app named MUCO\_BALAD, designed for people with CF aged ?18 years, health care professionals, and researchers to monitor the decisional balance for PA in people with CF. In the acceptability evaluation phase, the sample included 47 health care professionals, 44 people with CF, and 12 researchers. The analysis revealed that the acceptability measures were positive and that app acceptability did not differ according to user types. Semistructured interviews helped identify positive and negative perceptions of the app and the interface, as well as missing functionalities. Conclusions: This study assessed the acceptability of an app and demonstrated promising qualitative and quantitative results. The digital tool for measuring the decisional balance in PA for people with CF is encouraging for health care professionals, people with CF, and researchers, according to the valuable insights gained from this study. ",
doi="10.2196/54322",
url="https://formative.jmir.org/2024/1/e54322",
url="http://www.ncbi.nlm.nih.gov/pubmed/39078689"
}


@Article{info:doi/10.2196/58724,
author="Kim, Sunghak
and Wilson, Paije
and Abraham, Olufunmilola",
title="Investigating the Use of Serious Games for Cancer Control Among Children and Adolescents: Scoping Review",
journal="JMIR Serious Games",
year="2024",
month="Jul",
day="10",
volume="12",
pages="e58724",
keywords="serious games",
keywords="cancer control",
keywords="children",
keywords="adolescents",
keywords="scoping review",
keywords="game",
keywords="games",
keywords="gaming",
keywords="cancer",
keywords="oncology",
keywords="pediatric",
keywords="pediatrics",
keywords="paediatric",
keywords="paediatrics",
keywords="child",
keywords="youth",
keywords="adolescent",
keywords="teen",
keywords="teens",
keywords="teenager",
keywords="teenagers",
keywords="synthesis",
keywords="review methods",
keywords="review methodology",
keywords="search",
keywords="searches",
keywords="searching",
keywords="scoping",
abstract="Background: Effective health care services that meet the diverse needs of children and adolescents with cancer are required to alleviate their physical, psychological, and social challenges and improve their quality of life. Previous studies showed that serious games help promote people's health. However, the potential for serious games to be used for successful cancer control for children and adolescents has received less attention. Objective: This scoping review aimed to map the use of serious games in cancer prevention and cancer care for children and adolescents, and provide future directions for serious games' development and implementation within the context of cancer control for children and adolescents. Methods: This study followed a combination of the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) and the JBI (Joanna Briggs Institute) framework for the conduct of scoping reviews. PubMed, CINAHL Plus Full Text, Scopus, Web of Science Core Collection, and American Psychological Association (APA) PsycINFO databases were used for the search. Results: From the initial 2750 search results, 63 papers were included in the review, with 28 quantitative, 14 qualitative, and 21 mixed method studies. Most of the studies were cancer care serious game papers (55/63, 87\%) and a small number of studies were cancer prevention serious game papers (8/63, 13\%). The majority of the included studies were published between 2019 and 2023 (cancer prevention: 5/8, 63\%; cancer care: 35/55, 64\%). The majority of the studies were conducted in Europe (cancer prevention: 3/8, 38\%; cancer care: 24/55, 44\%) and North America (cancer prevention: 4/8, 50\%; cancer care: 17/55, 31\%). Adolescents were the most represented age group in the studies' participants (cancer prevention: 8/8, 100\%; cancer care: 46/55, 84\%). All (8/8, 100\%) cancer prevention serious game papers included healthy people as participants, and 45 out of 55 (82\%) cancer care serious game papers included patients with cancer. The majority of cancer prevention serious game papers addressed game preference as a target outcome (4/8, 50\%). The majority of cancer care serious game papers addressed symptom management as a target outcome (28/55, 51\%). Of the cancer care studies examining serious games for symptom management, the majority of the studies were conducted to treat psychological (13/55, 24\%) and physical symptoms (10/55, 18\%). Conclusions: This review shows both the growth of interest in the use of serious games for cancer control among children and adolescents and the potential for bias in the relevant literature. The diverse characteristics of the included papers suggest that serious games can be used in various ways for cancer control among children and adolescents while highlighting the need to develop and implement serious games in underrepresented areas. ",
doi="10.2196/58724",
url="https://games.jmir.org/2024/1/e58724",
url="http://www.ncbi.nlm.nih.gov/pubmed/38985502"
}


@Article{info:doi/10.2196/51538,
author="Zhang, Kun
and Huang, Qiyuan
and Wang, Qiaosong
and Li, Chengyang
and Zheng, Qirong
and Li, Zhuoyue
and Xu, Dan
and Xie, Cuiling
and Zhang, Mingqi
and Lin, Rongjin",
title="Telemedicine in Improving Glycemic Control Among Children and Adolescents With Type 1 Diabetes Mellitus: Systematic Review and Meta-Analysis",
journal="J Med Internet Res",
year="2024",
month="Jul",
day="9",
volume="26",
pages="e51538",
keywords="telemedicine",
keywords="digital health",
keywords="web-based",
keywords="type 1 diabetes mellitus",
keywords="children",
keywords="adolescents",
keywords="glycemic control",
keywords="chronic disease management",
keywords="randomized controlled trials",
keywords="meta-analysis",
keywords="mobile phone",
abstract="Background: Type 1 diabetes mellitus (T1DM) is the most common chronic autoimmune disease among children and adolescents. Telemedicine has been widely used in the field of chronic disease management and can benefit patients with T1DM. However, existing studies lack high-level evidence related to the effectiveness of telemedicine for glycemic control in children and adolescents with T1DM. Objective: This study aims to systematically review the evidence on the effectiveness of telemedicine interventions compared with usual care on glycemic control among children and adolescents with T1DM. Methods: In this systematic review and meta-analysis, we searched PubMed, Cochrane Library, Embase, Web of Science (all databases), and CINAHL Complete from database inception to May 2023. We included randomized controlled trials (RCTs) that evaluated the effectiveness of a telemedicine intervention on glycemic control in children and adolescents with T1DM. In total, 2 independent reviewers performed the study selection and data extraction. Study quality was assessed using the Cochrane Risk of Bias 2 tool. Our primary outcome was glycated hemoglobin (HbA1c) levels. Secondary outcomes were quality of life, self-monitoring of blood glucose, the incidence of hypoglycemia, and cost-effectiveness. A random-effects model was used for this meta-analysis. Results: Overall, 20 RCTs (1704 participants from 12 countries) were included in the meta-analysis. Only 5\% (1/20) of the studies were at high risk of bias. Compared to usual care, telemedicine was found to reduce HbA1c levels by 0.22 (95\% CI --0.33 to --0.10; P<.001; I2=35\%). There was an improvement in self-monitoring of blood glucose (mean difference [MD] 0.54, 95\% CI --0.72 to 1.80; P=.40; I2=67.8\%) and the incidence of hypoglycemia (MD --0.15, 95\% CI --0.57 to 0.27; P=.49; I2=70.7\%), although this was not statistically significant. Moreover, telemedicine had no convincing effect on the Diabetes Quality of Life for Youth score (impact of diabetes: P=.59; worries about diabetes: P=.71; satisfaction with diabetes: P=.68), but there was a statistically significant improvement in non--youth-specific quality of life (MD --0.24, 95\% CI --0.45 to --0.02; P=.04; I2=0\%). Subgroup analyses revealed that the effect of telemedicine on HbA1c levels appeared to be greater in studies involving children (MD --0.41, 95\% CI --0.62 to --0.20; P<.001), studies that lasted <6 months (MD --0.32, 95\% CI --0.48 to --0.17; P<.001), studies where providers used smartphone apps to communicate with patients (MD --0.37, 95\% CI --0.53 to --0.21; P<.001), and studies with medication dose adjustment (MD --0.25, 95\% CI --0.37 to --0.12; P<.001). Conclusions: Telemedicine can reduce HbA1c levels and improve quality of life in children and adolescents with T1DM. Telemedicine should be regarded as a useful supplement to usual care to control HbA1c levels and a potentially cost-effective mode. Meanwhile, researchers should develop higher-quality RCTs using large samples that focus on hard clinical outcomes, cost-effectiveness, and quality of life. ",
doi="10.2196/51538",
url="https://www.jmir.org/2024/1/e51538"
}


@Article{info:doi/10.2196/51743,
author="G{\'o}mez-Valverde, J. Juan
and S{\'a}nchez-Jacob, Ram{\'o}n
and Rib{\'o}, Luis Jos{\'e}
and Schaaf, Simon H.
and Garc{\'i}a Delgado, Lara
and Hernanz-Lobo, Alicia
and Capell{\'a}n-Mart{\'i}n, Daniel
and Lancharro, {\'A}ngel
and Augusto, Orvalho
and Garc{\'i}a-Basteiro, L. Alberto
and Santiago-Garc{\'i}a, Bego{\~n}a
and L{\'o}pez-Varela, Elisa
and Ledesma-Carbayo, J. Mar{\'i}a",
title="Chest X-Ray--Based Telemedicine Platform for Pediatric Tuberculosis Diagnosis in Low-Resource Settings: Development and Validation Study",
journal="JMIR Pediatr Parent",
year="2024",
month="Jul",
day="1",
volume="7",
pages="e51743",
keywords="telemedicine",
keywords="telehealth",
keywords="pediatric tuberculosis",
keywords="tuberculosis",
keywords="screening",
keywords="chest radiograph",
keywords="usability",
keywords="low-resource settings",
abstract="Background: Tuberculosis (TB) remains a major cause of morbidity and death worldwide, with a significant impact on children, especially those under the age of 5 years. The complex diagnosis of pediatric TB, compounded by limited access to more accurate diagnostic tests, underscores the need for improved tools to enhance diagnosis and care in resource-limited settings. Objective: This study aims to present a telemedicine web platform, BITScreen PTB (Biomedical Image Technologies Screen for Pediatric Tuberculosis), aimed at improving the evaluation of pulmonary TB in children based on digital chest x-ray (CXR) imaging and clinical information in resource-limited settings. Methods: The platform was evaluated by 3 independent expert readers through a retrospective assessment of a data set with 218 imaging examinations of children under 3 years of age, selected from a previous study performed in Mozambique. The key aspects assessed were the usability through a standardized questionnaire, the time needed to complete the assessment through the platform, the performance of the readers to identify TB cases based on the CXR, the association between the TB features identified in the CXRs and the initial diagnostic classification, and the interreader agreement of the global assessment and the radiological findings. Results: The platform's usability and user satisfaction were evaluated using a questionnaire, which received an average rating of 4.4 (SD 0.59) out of 5. The average examination completion time ranged from 35 to 110 seconds. In addition, the study on CXR showed low sensitivity (16.3\%-28.2\%) but high specificity (91.1\%-98.2\%) in the assessment of the consensus case definition of pediatric TB using the platform. The CXR finding having a stronger association with the initial diagnostic classification was air space opacification ($\chi$21>20.38, P<.001). The study found varying levels of interreader agreement, with moderate/substantial agreement for air space opacification ($\kappa$=0.54-0.67) and pleural effusion ($\kappa$=0.43-0.72). Conclusions: Our findings support the promising role of telemedicine platforms such as BITScreen PTB in enhancing pediatric TB diagnosis access, particularly in resource-limited settings. Additionally, these platforms could facilitate the multireader and systematic assessment of CXR in pediatric TB clinical studies. ",
doi="10.2196/51743",
url="https://pediatrics.jmir.org/2024/1/e51743",
url="http://www.ncbi.nlm.nih.gov/pubmed/38949860"
}


@Article{info:doi/10.2196/55100,
author="Lyzwinski, Lynnette
and Mcdonald, Sheila
and Zwicker, Jennifer
and Tough, Suzanne",
title="Digital and Hybrid Pediatric and Youth Mental Health Program Implementation Challenges During the Pandemic: Literature Review With a Knowledge Translation and Theoretical Lens Analysis",
journal="JMIR Pediatr Parent",
year="2024",
month="Jun",
day="25",
volume="7",
pages="e55100",
keywords="mental health",
keywords="knowledge translation",
keywords="KT",
keywords="flourishing",
keywords="youth",
keywords="teenagers",
keywords="mindfulness",
keywords="positive psychology",
keywords="telehealth",
keywords="implementation",
keywords="knowledge dissemination",
keywords="pandemic",
keywords="COVID-19",
keywords="service delivery",
abstract="Background: The pandemic brought unprecedented challenges for child and youth mental health. There was a rise in depression, anxiety, and symptoms of suicidal ideation. Objective: The aims of this knowledge synthesis were to gain a deeper understanding of what types of mental health knowledge translation (KT) programs, mental health first aid training, and positive psychology interventions were developed and evaluated for youth mental health. Methods: We undertook a literature review of PubMed and MEDLINE for relevant studies on youth mental health including digital and hybrid programs undertaken during the pandemic (2020-2022). Results: A total of 60 studies were included in this review. A few KT programs were identified that engaged with a wide range of stakeholders during the pandemic, and a few were informed by KT theories. Key challenges during the implementation of mental health programs for youth included lack of access to technology and privacy concerns. Hybrid web-based and face-to-face KT and mental health care were recommended. Providers required adequate training in using telehealth and space. Conclusions: There is an opportunity to reduce the barriers to implementing tele--mental health in youth by providing adequate technological access, Wi-Fi and stationary internet connectivity, and privacy protection. Staff gained new knowledge and training from the pandemic experience of using telehealth, which will serve as a useful foundation for the future. Future research should aim to maximize the benefits of hybrid models of tele--mental health and face-to-face sessions while working on minimizing the potential barriers that were identified. In addition, future programs could consider combining mental health first aid training with hybrid digital and face-to-face mental health program delivery along with mindfulness and resilience building in a unified model of care, knowledge dissemination, and implementation. ",
doi="10.2196/55100",
url="https://pediatrics.jmir.org/2024/1/e55100",
url="http://www.ncbi.nlm.nih.gov/pubmed/38916946"
}


@Article{info:doi/10.2196/48549,
author="Pare, M. Shannon
and Gunn, Elizabeth
and Morrison, M. Katherine
and Miller, L. Alison
and Duncan, M. Alison
and Buchholz, C. Andrea
and Ma, L. David W.
and Tremblay, F. Paul
and Vallis, Ann Lori
and Mercer, J. Nicola
and Haines, Jess",
title="Testing a Biobehavioral Model of Chronic Stress and Weight Gain in Young Children (Family Stress Study): Protocol and Baseline Demographics for a Prospective Observational Study",
journal="JMIR Res Protoc",
year="2024",
month="Jun",
day="20",
volume="13",
pages="e48549",
keywords="stress",
keywords="child, preschool",
keywords="adiposity",
keywords="household chaos",
keywords="cortisol",
keywords="COVID-19",
keywords="behavioral mechanisms",
keywords="caregiver-child relationship quality",
abstract="Background: Chronic stress is an important risk factor in the development of obesity. While research suggests chronic stress is linked to excess weight gain in children, the biological or behavioral mechanisms are poorly understood. Objective: The objectives of the Family Stress Study are to examine behavioral and biological pathways through which chronic stress exposure (including stress from COVID-19) may be associated with adiposity in young children, and to determine if factors such as child sex, caregiver-child relationship quality, caregiver education, and caregiver self-regulation moderate the association between chronic stress and child adiposity. Methods: The Family Stress Study is a prospective cohort study of families recruited from 2 Canadian sites: the University of Guelph in Guelph, Ontario, and McMaster University in Hamilton, Ontario. Participants will be observed for 2 years and were eligible to participate if they had at least one child (aged 2-6 years) and no plans to move from the area within the next 3 years. Study questionnaires and measures were completed remotely at baseline and will be assessed using the same methods at 1- and 2-year follow-ups. At each time point, caregivers measure and report their child's height, weight, and waist circumference, collect a hair sample for cortisol analysis, and fit their child with an activity monitor to assess the child's physical activity and sleep. Caregivers also complete a web-based health and behaviors survey with questions about family demographics, family stress, their own weight-related behaviors, and their child's mental health, as well as a 1-day dietary assessment for their child. Results: Enrollment for this study was completed in December 2021. The final second-year follow-up was completed in April 2024. This study's sample includes 359 families (359 children, 359 female caregivers, and 179 male caregivers). The children's mean (SD) age is 3.9 years (1.2 years) and 51\% (n=182) are female. Approximately 74\% (n=263) of children and 80\% (n=431) of caregivers identify as White. Approximately 34\% (n=184) of caregivers have a college diploma or less and nearly 93\% (n=499) are married or cohabiting with a partner. Nearly half (n=172, 47\%) of the families have an annual household income ?CAD \$100,000 (an average exchange rate of 1 CAD=0.737626 USD applies). Data cleaning and analysis are ongoing as of manuscript publication. Conclusions: Despite public health restrictions from COVID-19, the Family Stress Study was successful in recruiting and using remote data collection to successfully engage families in this study. The results from this study will help identify the direction and relative contributions of the biological and behavioral pathways linking chronic stress and adiposity. These findings will aid in the development of effective interventions designed to modify these pathways and reduce obesity risk in children. Trial Registration: ClinicalTrials.gov NCT05534711; https://clinicaltrials.gov/study/NCT05534711 International Registered Report Identifier (IRRID): DERR1-10.2196/48549 ",
doi="10.2196/48549",
url="https://www.researchprotocols.org/2024/1/e48549",
url="http://www.ncbi.nlm.nih.gov/pubmed/38900565"
}


@Article{info:doi/10.2196/57965,
author="Nielsen, Stecher Martine
and Steinsbekk, Aslak
and N{\o}st, Hatlen Torunn",
title="Development of Recommendations for the Digital Sharing of Notes With Adolescents in Mental Health Care: Delphi Study",
journal="JMIR Ment Health",
year="2024",
month="Jun",
day="6",
volume="11",
pages="e57965",
keywords="electronic health record",
keywords="EHR",
keywords="electronic health records",
keywords="EHRs",
keywords="electronic medical record",
keywords="EMR",
keywords="electronic medical records",
keywords="EMRs",
keywords="patient record",
keywords="health record",
keywords="health records",
keywords="personal health record",
keywords="PHR",
keywords="online access to electronic health records",
keywords="open notes",
keywords="clinical notes",
keywords="adolescent mental health care",
keywords="adolescent mental health",
keywords="child mental health",
keywords="mental health",
keywords="mental illness",
keywords="mental illnesses",
keywords="mental disorder",
keywords="mental disorders",
keywords="recommendations",
keywords="Delphi study",
keywords="digital mental health",
keywords="e-health",
keywords="eHealth",
keywords="e--mental health",
keywords="health care professionals",
keywords="digital health care",
abstract="Background: In many countries, health care professionals are legally obliged to share information from electronic health records with patients. However, concerns have been raised regarding the sharing of notes with adolescents in mental health care, and health care professionals have called for recommendations to guide this practice. Objective: The aim was to reach a consensus among authors of scientific papers on recommendations for health care professionals' digital sharing of notes with adolescents in mental health care and to investigate whether staff at child and adolescent specialist mental health care clinics agreed with the recommendations. Methods: A Delphi study was conducted with authors of scientific papers to reach a consensus on recommendations. The process of making the recommendations involved three steps. First, scientific papers meeting the eligibility criteria were identified through a PubMed search where the references were screened. Second, the results from the included papers were coded and transformed into recommendations in an iterative process. Third, the authors of the included papers were asked to provide feedback and consider their agreement with each of the suggested recommendations in two rounds. After the Delphi process, a cross-sectional study was conducted among staff at specialist child and adolescent mental health care clinics to assess whether they agreed with the recommendations that reached a consensus. Results: Of the 84 invited authors, 27 responded. A consensus was reached on 17 recommendations on areas related to digital sharing of notes with adolescents in mental health care. The recommendations considered how to introduce digital access to notes, write notes, and support health care professionals, and when to withhold notes. Of the 41 staff members at child and adolescent specialist mental health care clinics, 60\% or more agreed with the 17 recommendations. No consensus was reached regarding the age at which adolescents should receive digital access to their notes and the timing of digitally sharing notes with parents. Conclusions: A total of 17 recommendations related to key aspects of health care professionals' digital sharing of notes with adolescents in mental health care achieved consensus. Health care professionals can use these recommendations to guide their practice of sharing notes with adolescents in mental health care. However, the effects and experiences of following these recommendations should be tested in clinical practice. ",
doi="10.2196/57965",
url="https://mental.jmir.org/2024/1/e57965"
}


@Article{info:doi/10.2196/56919,
author="Ma, Yanan
and Law, Kate
and Hassan, Lamiece
and Nenadic, Goran
and van der Veer, N. Sabine",
title="Experiences and Views of Young People and Health Care Professionals of Using Social Media to Self-Manage Type 1 Diabetes Mellitus: Thematic Synthesis of Qualitative Studies",
journal="JMIR Pediatr Parent",
year="2024",
month="May",
day="29",
volume="7",
pages="e56919",
keywords="adolescents",
keywords="health care professionals",
keywords="social media",
keywords="thematic synthesis",
keywords="type 1 diabetes",
keywords="type 1 diabetes mellitus",
keywords="T1DM",
keywords="young people",
abstract="Background: Social media have shown the potential to support type 1 diabetes self-management by providing informational, emotional, and peer-to-peer support. However, the perceptions of young people and health care professionals' (HCPs) toward the use of social media for type 1 diabetes self-management have not been systematically reviewed. Objective: The aim of this study is to explore and summarize the experiences and views of young people with type 1 diabetes and their HCPs on using social media for self-management across qualitative findings. Methods: We searched MEDLINE, Embase, PsycINFO, and CINAHL from 2012 to 2023 using Medical Subject Heading terms and text words related to type 1 diabetes and social media. We screened and selected the studies according to the inclusion and exclusion criteria. We quality appraised and characterized the included studies and conducted a thematic synthesis. Results: We included 11 studies in our synthesis. A total of 9 of them were qualitative and 2 were mixed methods studies. Ten focused on young people with type 1 diabetes and 1 on HCPs. All used content analysis and were of moderate to high quality. Thirteen descriptive themes were yielded by our thematic synthesis, contributing to five analytic themes: (1) differences in how young people interact with social media, (2) characteristics of social media platforms that influence their use and uptake for type 1 diabetes self-management, (3) social media as a source of information, (4) impact on young people's coping and emotional well-being, and (5) impact on support from and relationships with HCPs and services. Conclusions: The synthesis suggests that we should consider leveraging social media's peer support capabilities to augment the traditional services for young people with type 1 diabetes. However, the patients may have privacy concerns about HCPs' involvement in their online activities. This warrants an update of existing guidelines to help young people use social media safely for self-managing their diabetes. ",
doi="10.2196/56919",
url="https://pediatrics.jmir.org/2024/1/e56919",
url="http://www.ncbi.nlm.nih.gov/pubmed/38809591"
}


@Article{info:doi/10.2196/56168,
author="Abraham, Olufunmilola
and McCarthy, J. Tyler",
title="An Introduction to the OutSMART Cancer Serious Game: Current and Future Directions",
journal="JMIR Cancer",
year="2024",
month="May",
day="29",
volume="10",
pages="e56168",
keywords="serious game",
keywords="cancer",
keywords="health education",
keywords="adolescents",
keywords="health behavior",
keywords="United States",
keywords="young people",
keywords="adolescent",
keywords="teenager",
keywords="teenagers",
keywords="cancer prevention",
keywords="education",
keywords="cancer risk",
keywords="tool",
keywords="OutSMART Cancer",
keywords="innovative",
keywords="game development",
keywords="cancer awareness",
keywords="prevention",
keywords="wellness",
doi="10.2196/56168",
url="https://cancer.jmir.org/2024/1/e56168",
url="http://www.ncbi.nlm.nih.gov/pubmed/38809587"
}


@Article{info:doi/10.2196/55569,
author="Zhao, Licong
and Agazzi, Heather
and Du, Yasong
and Meng, Hongdao
and Maku, Renya
and Li, Ke
and Aspinall, Peter
and Garvan, Wilson Cynthia
and Fang, Shuanfeng",
title="A Digital Cognitive-Physical Intervention for Attention-Deficit/Hyperactivity Disorder: Randomized Controlled Trial",
journal="J Med Internet Res",
year="2024",
month="May",
day="10",
volume="26",
pages="e55569",
keywords="school-age children",
keywords="cognitive training",
keywords="exercise therapy",
keywords="gamification",
keywords="ADHD",
keywords="attention deficit",
keywords="attention-deficit/hyperactivity disorder",
keywords="RCT",
keywords="randomized controlled trial",
keywords="executive function",
keywords="digital intervention",
keywords="AR",
keywords="augmented reality",
abstract="Background: Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurodevelopmental disorders among children. Pharmacotherapy has been the primary treatment for ADHD, supplemented by behavioral interventions. Digital and exercise interventions are promising nonpharmacologic approaches for enhancing the physical and psychological health of children with ADHD. However, the combined impact of digital and exercise therapies remains unclear. Objective: The aim of this study was to determine whether BrainFit, a novel digital intervention combining gamified cognitive and exercise training, is efficacious in reducing ADHD symptoms and executive function (EF) among school-aged children with ADHD. Methods: This 4-week prospective randomized controlled trial included 90 children (6-12 years old) who visited the ADHD outpatient clinic and met the diagnostic criteria for ADHD. The participants were randomized (1:1) to the BrainFit intervention (n=44) or a waitlist control (n=46) between March and August 2022. The intervention consisted of 12 30-minute sessions delivered on an iPad over 4 weeks with 3 sessions per week (Monday, Wednesday, and Friday after school) under the supervision of trained staff. The primary outcomes were parent-rated symptoms of attention and hyperactivity assessed according to the Swanson, Nolan, and Pelham questionnaire (SNAP-IV) rating scale and EF skills assessed by the Behavior Rating Inventory of Executive Function (BRIEF) scale, evaluated pre and post intervention. Intention-to-treat analysis was performed on 80 children after attrition. A nonparametric resampling-based permutation test was used for hypothesis testing of intervention effects. Results: Among the 145 children who met the inclusion criteria, 90 consented and were randomized; ultimately, 80 (88.9\%) children completed the study and were included in the analysis. The participants' average age was 8.4 (SD 1.3) years, including 63 (78.8\%) male participants. The most common ADHD subtype was hyperactive/impulsive (54/80, 68\%) and 23 (29\%) children had severe symptoms. At the endpoint of the study, the BrainFit intervention group had a significantly larger improvement in total ADHD symptoms (SNAP-IV total score) as compared to those in the control group ($\beta$=--12.203, 95\% CI --17.882 to --6.523; P<.001), owing to lower scores on the subscales Inattention ($\beta$=--3.966, 95\% CI --6.285 to --1.647; P<.001), Hyperactivity/Impulsivity ($\beta$=--5.735, 95\% CI --8.334 to --3.137; P<.001), and Oppositional Defiant Disorder ($\beta$=--2.995, 95\% CI --4.857 to --1.132; P=.002). The intervention was associated with significant reduction in the Metacognition Index ($\beta$=--6.312, 95\% CI --10.973 to --1.650; P=.006) and Global Executive Composite ($\beta$=--5.952, 95\% CI --10.214 to --1.690; P=.003) on the BRIEF. No severe intervention-related adverse events were reported. Conclusions: This novel digital cognitive-physical intervention was efficacious in school-age children with ADHD. A larger multicenter effectiveness trial with longer follow-up is warranted to confirm these findings and to assess the durability of treatment effects. Trial Registration: Chinese Clinical Trial Register ChiCTR2300070521; https://www.chictr.org.cn/showproj.html?proj=177806 ",
doi="10.2196/55569",
url="https://www.jmir.org/2024/1/e55569",
url="http://www.ncbi.nlm.nih.gov/pubmed/38728075"
}


@Article{info:doi/10.2196/55559,
author="Galea, T. Jerome
and Vasquez, H. Diego
and Rupani, Neil
and Gordon, B. Moya
and Tapia, Milagros
and Greene, Y. Karah
and Kolevic, Lenka
and Franke, F. Molly
and Contreras, Carmen",
title="Development and Pilot-Testing of an Optimized Conversational Agent or ``Chatbot'' for Peruvian Adolescents Living With HIV to Facilitate Mental Health Screening, Education, Self-Help, and Linkage to Care: Protocol for a Mixed Methods, Community-Engaged Study",
journal="JMIR Res Protoc",
year="2024",
month="May",
day="7",
volume="13",
pages="e55559",
keywords="chatbot",
keywords="digital assistant",
keywords="depression",
keywords="HIV",
keywords="adolescents",
abstract="Background: Adolescents living with HIV are disproportionally affected by depression, which worsens antiretroviral therapy adherence, increases viral load, and doubles the risk of mortality. Because most adolescents living with HIV live in low- and middle-income countries, few receive depression treatment due to a lack of mental health services and specialists in low-resource settings. Chatbot technology, used increasingly in health service delivery, is a promising approach for delivering low-intensity depression care to adolescents living with HIV in resource-constrained settings. Objective: The goal of this study is to develop and pilot-test for the feasibility and acceptability of a prototype, optimized conversational agent (chatbot) to provide mental health education, self-help skills, and care linkage for adolescents living with HIV. Methods: Chatbot development comprises 3 phases conducted over 2 years. In the first phase (year 1), formative research will be conducted to understand the views, opinions, and preferences of up to 48 youths aged 10-19 years (6 focus groups of up to 8 adolescents living with HIV per group), their caregivers (5 in-depth interviews), and HIV program personnel (5 in-depth interviews) regarding depression among adolescents living with HIV. We will also investigate the perceived acceptability of a mental health chatbot, including barriers and facilitators to accessing and using a chatbot for depression care by adolescents living with HIV. In the second phase (year 1), we will iteratively program a chatbot using the SmartBot360 software with successive versions (0.1, 0.2, and 0.3), meeting regularly with a Youth Advisory Board comprised of adolescents living with HIV who will guide and inform the chatbot development and content to arrive at a prototype version (version 1.0) for pilot-testing. In the third phase (year 2), we will pilot-test the prototype chatbot among 50 adolescents living with HIV na{\"i}ve to its development. Participants will interact with the chatbot for up to 2 weeks, and data will be collected on the acceptability of the chatbot-delivered depression education and self-help strategies, depression knowledge changes, and intention to seek care linkage. Results: The study was awarded in April 2022, received institutional review board approval in November 2022, received funding in December 2022, and commenced recruitment in March 2023. By the completion of study phases 1 and 2, we expect our chatbot to incorporate key needs and preferences gathered from focus groups and interviews to develop the chatbot. By the completion of study phase 3, we will have assessed the feasibility and acceptability of the prototype chatbot. Study phase 3 began in April 2024. Final results are expected by January 2025 and published thereafter. Conclusions: The study will produce a prototype mental health chatbot developed with and for adolescents living with HIV that will be ready for efficacy testing in a subsequent, larger study. International Registered Report Identifier (IRRID): DERR1-10.2196/55559 ",
doi="10.2196/55559",
url="https://www.researchprotocols.org/2024/1/e55559",
url="http://www.ncbi.nlm.nih.gov/pubmed/38713501"
}


@Article{info:doi/10.2196/57226,
author="Ledoux, Andr{\'e}e-Anne
and Zemek, Roger
and Cairncross, Molly
and Silverberg, Noah
and Sicard, Veronik
and Barrowman, Nicholas
and Goldfield, Gary
and Gray, Clare
and Harris, D. Ashley
and Jaworska, Natalia
and Reed, Nick
and Saab, J. Bechara
and Smith, Andra
and Walker, Lisa",
title="Smartphone App--Delivered Mindfulness-Based Intervention for Mild Traumatic Brain Injury in Adolescents: Protocol for a Feasibility Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="11",
volume="13",
pages="e57226",
keywords="pediatric",
keywords="concussion",
keywords="persisting symptoms after concussion",
keywords="mindfulness",
keywords="randomized controlled trial",
keywords="feasibility RCT",
keywords="psychological intervention",
keywords="youth",
keywords="digital therapeutics",
keywords="eHealth",
keywords="mobile health",
keywords="mHealth",
keywords="mobile phone",
abstract="Background: Concussion in children and adolescents is a significant public health concern, with 30\% to 35\% of patients at risk for prolonged emotional, cognitive, sleep, or physical symptoms. These symptoms negatively impact a child's quality of life while interfering with their participation in important neurodevelopmental activities such as schoolwork, socializing, and sports. Early psychological intervention following a concussion may improve the ability to regulate emotions and adapt to postinjury symptoms, resulting in the greater acceptance of change; reduced stress; and recovery of somatic, emotional, and cognitive symptoms. Objective: The primary objective of this study is to assess the feasibility of conducting a parallel-group (1:1) randomized controlled trial (RCT) to evaluate a digital therapeutics (DTx) mindfulness-based intervention (MBI) in adolescents aged 12 to <18 years. The attention-matched comparator intervention (a math game also used in previous RCTs) will be delivered on the same DTx platform. Both groups will be provided with the standard of care guidelines. The secondary objective is to examine intervention trends for quality of life; resilience; self-efficacy; cognition such as attention, working memory, and executive functioning; symptom burden; and anxiety and depression scores at 4 weeks after concussion, which will inform a more definitive RCT. A subsample will be used to examine whether those randomized to the experimental intervention group have different brain-based imaging patterns compared with those randomized to the control group. Methods: This study is a double-blind Health Canada--regulated trial. A total of 70 participants will be enrolled within 7 days of concussion and randomly assigned to receive the 4-week DTx MBI (experimental group) or comparator intervention. Feasibility will be assessed based on the recruitment rate, treatment adherence to both interventions, and retention. All outcome measures will be evaluated before the intervention (within 7 days after injury) and at 1, 2, and 4 weeks after the injury. A subset of 60 participants will undergo magnetic resonance imaging within 72 hours and at 4 weeks after recruitment to identify the neurophysiological mechanisms underlying the potential benefits from MBI training in adolescents following a concussion. Results: The recruitment began in October 2022, and the data collection is expected to be completed by September 2024. Data collection and management is still in progress; therefore, data analysis is yet to be conducted. Conclusions: This trial will confirm the feasibility and resolve uncertainties to inform a future definitive multicenter efficacy RCT. If proven effective, a smartphone-based MBI has the potential to be an accessible and low-risk preventive treatment for youth at risk of experiencing prolonged postconcussion symptoms and complications. Trial Registration: ClinicalTrials.gov NCT05105802; https://classic.clinicaltrials.gov/ct2/show/NCT05105802 International Registered Report Identifier (IRRID): DERR1-10.2196/57226 ",
doi="10.2196/57226",
url="https://www.researchprotocols.org/2024/1/e57226",
url="http://www.ncbi.nlm.nih.gov/pubmed/38602770"
}


@Article{info:doi/10.2196/57238,
author="Livermore, Polly
and Kupiec, Klaudia
and Wedderburn, R. Lucy
and Knight, Andrea
and Solebo, L. Ameenat
and Shafran, Roz
and Robert, Glenn
and Sebire, J. N.
and Gibson, Faith
and ",
title="Designing, Developing, and Testing a Chatbot for Parents and Caregivers of Children and Young People With Rheumatological Conditions (the IMPACT Study): Protocol for a Co-Designed Proof-of-Concept Study",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="3",
volume="13",
pages="e57238",
keywords="caregivers",
keywords="chatbot",
keywords="paediatric rheumatology",
keywords="parents and caregivers",
keywords="parents/carers",
keywords="pediatric",
keywords="proof-of-concept",
keywords="quality of life",
keywords="rheumatology",
abstract="Background: Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve their current well-being. One way of doing this is to empower parents and caregivers to have more of the answers that their children and young people need to support them further between their hospital appointments. Objective: The objective of this co-designed proof-of-concept study is to design, develop, and test a chatbot intervention to support parents and caregivers of children and young people with rheumatological conditions. Methods: This study will explore the needs and views of children and young people with rheumatological conditions, their siblings, parents, and caregivers, as well as health care professionals working in pediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon them. Creative experience-based co-design workshops will then decide upon top priorities to develop further while informing the appearance, functionality, and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents and caregivers will user-test the chatbot intervention in an iterative sprint methodology to determine its worth as a mechanism for support for parents. Results: A total of 73 children, young people, parents, caregivers, and health care professionals have so far been enrolled in the study, which began in November 2023. The anticipated completion date of the study is April 2026. The data analysis is expected to be completed in January 2026, with the results being published in April 2026. Conclusions: This study will provide evidence on the accessibility, acceptability, and usability of a chatbot intervention for parents and caregivers of children and young people with rheumatological conditions. If proven useful, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user-suggested support for parents and caregivers of children with chronic health conditions in health care services. This study is unique in that it will detail the needs and wants of children, young people, siblings, parents, and caregivers to improve the current support given to families living with pediatric rheumatological conditions. It will be conducted across the whole of the United Kingdom for all pediatric rheumatological conditions at all stages of the disease trajectory. International Registered Report Identifier (IRRID): DERR1-10.2196/57238 ",
doi="10.2196/57238",
url="https://www.researchprotocols.org/2024/1/e57238",
url="http://www.ncbi.nlm.nih.gov/pubmed/38568725"
}


@Article{info:doi/10.2196/54081,
author="Rojas-Anaya, Hector
and Kapur, Akshat
and Roberts, Graham
and Roland, Damian
and Gupta, Atul
and Lazner, Michaela
and Bayreuther, Jane
and Pappachan, John
and Jones, Christina
and Bremner, Stephen
and Cantle, Fleur
and Seddon, Paul",
title="High-Flow Humidified Oxygen as an Early Intervention in Children With Acute Severe Asthma: Protocol for a Feasibility Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Mar",
day="28",
volume="13",
pages="e54081",
keywords="asthma",
keywords="child",
keywords="wheezing",
keywords="oxygen therapy",
keywords="high-flow humidified oxygen therapy",
abstract="Background: Acute severe asthma (ASA) is a leading cause of hospital attendance in children. Standard first-line therapy consists of high-dose inhaled bronchodilators plus oral corticosteroids. Treatment for children who fail to respond to first-line therapy is problematic: the use of intravenous agents is inconsistent, and side effects are frequent. High-flow humidified oxygen (HiFlo) is widely used in respiratory conditions and is increasingly being used in ASA, but with little evidence for its effectiveness. A well-designed, adequately powered randomized controlled trial (RCT) of HiFlo therapy in ASA is urgently needed, and feasibility data are required to plan such an RCT. In this study, we describe the protocol for a feasibility study designed to fill this knowledge gap. Objective: This study aims to establish whether a full RCT of early HiFlo therapy in children with ASA can be conducted successfully and safely, to establish whether recruitment using deferred consent is practicable, and to define appropriate outcome measures and sample sizes for a definitive RCT. The underlying hypothesis is that early HiFlo therapy in ASA will reduce the need for more invasive treatments, allow faster recovery and discharge from hospital, and in both these ways reduce distress to children and their families. Methods: We conducted a feasibility RCT with deferred consent to assess the use of early HiFlo therapy in children aged 2 to 11 years with acute severe wheeze not responding to burst therapy (ie, high-dose inhaled salbutamol with or without ipratropium). Children with a Preschool Respiratory Assessment Measure score ?5 after burst therapy were randomized to commence HiFlo therapy or follow standard care. The candidate primary outcomes assessed were treatment failure requiring escalation and time to meet hospital discharge criteria. Patient and parent experiences were also assessed using questionnaires and telephone interviews. Results: The trial was opened to recruitment in February 2020 but was paused for 15 months owing to the COVID-19 pandemic. The trial was reopened at the lead site in July 2021 and opened at the other 3 sites from August to December 2022. Recruitment was completed in June 2023. Conclusions: This feasibility RCT of early HiFlo therapy in children with ASA recruited to the target despite major disturbances owing to the COVID-19 pandemic. The data are currently being analyzed and will be published separately. Trial Registration: International Standard Randomised Controlled Trial Number Registry ISRCTN78297040; https://www.isrctn.com/ISRCTN78297040 International Registered Report Identifier (IRRID): DERR1-10.2196/54081 ",
doi="10.2196/54081",
url="https://www.researchprotocols.org/2024/1/e54081",
url="http://www.ncbi.nlm.nih.gov/pubmed/38546733"
}


@Article{info:doi/10.2196/49440,
author="Wright, A. William J.
and Howdle, Charlotte
and Coulson, S. Neil
and De Simoni, Anna",
title="Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis",
journal="J Med Internet Res",
year="2024",
month="Mar",
day="15",
volume="26",
pages="e49440",
keywords="child",
keywords="internet-based intervention",
keywords="online health communities",
keywords="peer support",
keywords="qualitative analysis",
keywords="rehabilitation",
keywords="self-help group",
keywords="self-help",
keywords="social support",
keywords="stroke",
keywords="support groups",
keywords="thematic analysis",
abstract="Background: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. Objective: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. Methods: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ?18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. Results: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ?18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4\%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ?18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. Conclusions: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities. ",
doi="10.2196/49440",
url="https://www.jmir.org/2024/1/e49440",
url="http://www.ncbi.nlm.nih.gov/pubmed/38488858"
}


@Article{info:doi/10.2196/55327,
author="Yang, Cheng-hao
and Li, Xin-yu
and Lv, Jia-jie
and Hou, Meng-jie
and Zhang, Ru-hong
and Guo, Hong
and Feng, Chu",
title="Temporal Trends of Asthma Among Children in the Western Pacific Region From 1990 to 2045: Longitudinal Observational Study",
journal="JMIR Public Health Surveill",
year="2024",
month="Mar",
day="14",
volume="10",
pages="e55327",
keywords="allergic disorders",
keywords="global burden of disease",
keywords="disability-adjusted life years",
keywords="DALYs",
keywords="incidence",
keywords="prevalence",
abstract="Background: Asthma has become one of the most common chronic conditions worldwide, especially among children. Recent findings show that the prevalence of childhood asthma has increased by 12.6\% over the past 30 years, with >262 million people currently affected globally. The reasons for the growing asthma epidemic remain complex and multifactorial. Objective: This study aims to provide an up-to-date analysis of the changing global and regional asthma prevalence, mortality, disability, and risk factors among children aged <20 years by leveraging the latest data from the Global Burden of Disease Study 2019. Findings from this study can help inform priority areas for intervention to alleviate the rising burden of childhood asthma globally. Methods: The study used data from the Global Burden of Disease Study 2019, concentrating on children aged 0 to 14 years with asthma. We conducted an in-depth analysis of asthma, including its age-standardized prevalence, incidence, mortality, and disability-adjusted life years (DALYs), across diverse demographics, such as region, age, sex, and sociodemographic index, spanning 1990 to 2019. We also projected the future burden of the disease. Results: Overall, in the Western Pacific Region, the age-standardized prevalence rate of asthma among children increased slightly, from 3898.4 cases per 100,000 people in 1990 to 3924 per 100,000 in 2019. The age-standardized incidence rate of asthma also increased slightly, from 979.2 to 994.9 per 100,000. In contrast, the age-standardized death rate of asthma decreased from 0.9 to 0.4 per 100,000 and the age-standardized DALY rate decreased from 234.9 to 189.7 per 100,000. At the country level, Japan experienced a considerable decrease in the age-standardized prevalence rate of asthma among children, from 6669.1 per 100,000 in 1990 to 5071.5 per 100,000 in 2019. Regarding DALYs, Japan exhibited a notable reduction, from 300.6 to 207.6 per 100,000. Malaysia also experienced a DALY rate reduction, from 188.4 to 163.3 per 100,000 between 1990 and 2019. We project that the burden of disease in countries other than Japan and the Philippines will remain relatively stable up to 2045. Conclusions: The study indicates an increase in the prevalence and incidence of pediatric asthma, coupled with a decrease in mortality and DALYs in the Western Pacific Region between 1990 and 2019. These intricate phenomena appear to result from a combination of lifestyle shifts, environmental influences, and barriers to health care access. The findings highlight that nations such as Japan have achieved notable success in managing asthma. Overall, the study identified areas of improvement in view of persistent disease burden, underscoring the need for comprehensive collaborative efforts to mitigate the impact of pediatric asthma throughout the region. ",
doi="10.2196/55327",
url="https://publichealth.jmir.org/2024/1/e55327",
url="http://www.ncbi.nlm.nih.gov/pubmed/38483459"
}


@Article{info:doi/10.2196/49177,
author="Sisk, Bryan
and Antes, L. Alison
and Bereitschaft, Christine
and Enloe, Madi
and Bourgeois, Fabienne
and DuBois, James",
title="Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators",
journal="JMIR Pediatr Parent",
year="2024",
month="Mar",
day="11",
volume="7",
pages="e49177",
keywords="adolescent",
keywords="patient portal",
keywords="electronic health records",
keywords="policy",
keywords="ethics",
keywords="portal",
keywords="portals",
keywords="adolescents",
keywords="youth",
keywords="health record",
keywords="health records",
keywords="EHR",
keywords="EHRs",
keywords="perspective",
keywords="perspectives",
keywords="policies",
keywords="administrator",
keywords="administration",
keywords="informatics",
keywords="information system",
keywords="information systems",
keywords="guidelines",
abstract="Background: Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents. Objective: We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care. Methods: We interviewed informatics administrators from US hospitals with ?50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies. Results: We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent's health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators. Conclusions: Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent's health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers. ",
doi="10.2196/49177",
url="https://pediatrics.jmir.org/2024/1/e49177",
url="http://www.ncbi.nlm.nih.gov/pubmed/38466976"
}


@Article{info:doi/10.2196/56499,
author="Lai, Byron
and Oster, A. Robert
and Davis, Drew
and Bright, Larsen
and Fisher, Gordon
and Wilroy, Jereme
and Kim, Yumi
and Young, Raven
and Wright, Ashley
and Sinha, Tanvee
and Rimmer, H. James",
title="Telehealth Movement-to-Music With Arm-Based Sprint-Intensity Interval Training to Improve Cardiometabolic Health and Cardiorespiratory Fitness in Children With Cerebral Palsy: Protocol for a Pilot Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Mar",
day="5",
volume="13",
pages="e56499",
keywords="disability",
keywords="high-intensity",
keywords="interval training",
keywords="pediatrics",
keywords="physical activity",
keywords="telehealth",
abstract="Background: Children with mobility disabilities, including those with cerebral palsy, have limited options and limited time to exercise to manage their cardiometabolic health and cardiorespiratory fitness. Regular cardiovascular exercise during childhood is a critical health behavior for preventing health decline in adulthood. Thus, there is an urgent need for accessible, age-appropriate, convenient exercise modalities in this group. Sprint-intensity interval training (SIT), combined with telehealth procedures, may be ideal for children with disabilities. SIT includes repetitive bouts of maximal exercise effort combined with rest periods, which can be effective in eliciting comparable results to moderate-exercise training with very short training durations. Objective: This phase 1 pilot feasibility randomized controlled trial aims to investigate the potential effects of a 12-week SIT program on indicators of cardiorespiratory fitness and cardiometabolic health among children with cerebral palsy. An ancillary aim is to evaluate the feasibility of the program through several process feasibility metrics. Methods: This study uses a 2-armed parallel group design. A total of 50 physically inactive children with cerebral palsy (aged 6-17 years) will be randomly allocated into 1 of 2 groups: a 12-week SIT or a waitlist control group that continues habitual activity for 12 weeks. The SIT prescription includes 3 tele-supervised sessions per week with 30 repeated sequences of 4 seconds of maximal arm exercise, with active recovery, warm-up, and cooldown periods (for an approximately 20-minute total session). SIT includes guided videos with child-themed arm routines and music. The exercise sessions will be remotely supervised through a web-based videoconference application and include safety monitoring equipment. Outcomes are measured at pre- and postintervention (weeks 0 and 13, respectively). Health outcome measures include peak oxygen consumption (VO2 peak), measured by a graded exercise test; high-sensitivity C-reactive protein and blood insulin, hemoglobin A1c, triglycerides, and cholesterol using a finger stick dried blood spot test; blood pressure, using a sphygmomanometer; and body composition (total mass, total lean mass, tissue \% lean, and tissue \% fat) using dual x-ray absorptiometry. Feasibility will be evaluated by the following metrics: adverse events or problems experienced throughout the intervention related to participant safety; perceived enjoyment; and recruitment, enrollment, and attrition rates. Results: Recruitment procedures started in November 2023. All data are anticipated to be collected by February 2025. Full trial results are anticipated to be analyzed and submitted for publication by March 2025. Secondary analyses of data will be subsequently published. Conclusions: This trial tests an accessible and low-cost exercise program that leverages principles of high-intensity exercise to provide a convenient program for children with physical disabilities. Knowledge obtained from this study will inform the development of a larger trial for improving the cardiometabolic health, cardiorespiratory fitness, and well-being of children with physical disabilities. Trial Registration: ClinicalTrials.gov NCT05619211; https://clinicaltrials.gov/study/NCT05619211 International Registered Report Identifier (IRRID): DERR1-10.2196/56499 ",
doi="10.2196/56499",
url="https://www.researchprotocols.org/2024/1/e56499",
url="http://www.ncbi.nlm.nih.gov/pubmed/38441939"
}


@Article{info:doi/10.2196/47545,
author="Kokorelias, Marie Kristina
and Lee, Joan Tin-Suet
and Bayley, Mark
and Seto, Emily
and Toulany, Alene
and Nelson, A. Michelle L.
and Dimitropoulos, Gina
and Penner, Melanie
and Simpson, Robert
and Munce, P. Sarah E.",
title="A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study",
journal="JMIR Pediatr Parent",
year="2024",
month="Feb",
day="7",
volume="7",
pages="e47545",
keywords="youth",
keywords="patient navigation",
keywords="web-based intervention",
keywords="peer support",
keywords="transition",
keywords="childhood disability",
keywords="caregiver",
keywords="transitional care intervention",
keywords="social support",
keywords="usability",
keywords="program",
keywords="children",
keywords="pediatric",
keywords="disability",
keywords="digital health",
keywords="eHealth",
keywords="web-based support",
keywords="web-based health",
abstract="Background: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. Objective: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). Methods: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70\%) and their caregivers (7/23, 30\%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). Results: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. Conclusions: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities. ",
doi="10.2196/47545",
url="https://pediatrics.jmir.org/2024/1/e47545",
url="http://www.ncbi.nlm.nih.gov/pubmed/38324351"
}


@Article{info:doi/10.2196/48924,
author="Annesi, Thomas
and Steinway, Caren
and Oluwole, Toyosi
and Shilly, Steffi
and Szalda, Dava
and Myers, Regina
and Chen, Jack
and Jan, Sophia",
title="Quality of Web-Based Sickle Cell Disease Resources for Health Care Transition: Website Content Analysis",
journal="JMIR Pediatr Parent",
year="2023",
month="Dec",
day="13",
volume="6",
pages="e48924",
keywords="sickle cell",
keywords="health care transition",
keywords="readability",
keywords="Flesch Reading Ease",
keywords="health care information",
keywords="adulthood",
keywords="sickle cell disease",
keywords="online resource",
keywords="quality",
keywords="adolescent",
keywords="transition",
keywords="health care service",
keywords="website quality",
keywords="online information",
keywords="Ensuring Quality Information for Patients",
keywords="EQIP",
keywords="FRE",
abstract="Background: Adolescents and young adults with sickle cell disease (SCD) transitioning from pediatric to adult health care face a high-risk period associated with increased use of acute health care services and mortality. Although 59\% of American citizens report using the internet for health care information, the quality of web-based, patient-facing resources regarding transition in SCD care has not been evaluated. Objective: This study aimed to evaluate the quality and readability of web-based health information on SCD, especially as it pertains to the transition to adulthood for inidividuals with SCD. The study also compared the readability and content scores of websites identified in 2018 to those from 2021 to assess any change in quality over time. Methods: Keywords representing phrases adolescents may use while searching for information on the internet regarding transition in SCD care, including ``hydroxyurea'' and ``SCD transition,'' were identified. A web-based search using the keywords was conducted in July 2021 using Google, Yahoo, and Bing. The top 20 links from each search were collected. Duplicate websites, academic journals, and websites not related to SCD health care transition were excluded. Websites were categorized based on the source: health department, hospital or private clinician, professional society, and other websites. Websites were assessed using Health On the Net Foundation code of conduct (HONcode), Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FGL), Ensuring Quality Information for Patients (EQIP), and a novel SCD content checklist (SCDCC). EQIP and SCDCC scores range from 0- to 100. Each website was reviewed by 2 research assistants and assessed for interrater reliability. Descriptive statistics were calculated. Results: Of the 900 websites collected, 67 (7.4\%) met the inclusion criteria: 13 health department, 7 hospital or private clinician, 33 professional society, and 14 other websites. A total of 15 (22\%) out of 67 websites had HONcode certification. Websites with HONcode certification had higher FRE and EQIP scores and lower FGL scores than those without HONcode certification, reflecting greater readability. Websites without HONcode certification had higher SCDCC scores, reflecting greater clinical content. Only 7 (10\%) websites met the National Institutes of Health recommendation of a seventh-grade or lower reading level. Based on EQIP scores, 6 (9\%) websites were of high quality. The mean SCDCC score was 20.60 (SD 22.14) out of 100. The interrater reliability for EQIP and SCDCC ratings was good (intraclass correlation: 0.718 and 0.897, respectively). No source of website scored significantly higher mean EQIP, FRE, FGL, or SCDCC scores than the others (all P<.05). Conclusions: Although seeking health care information on the web is very common, the overall quality of information about transition in SCD care on the internet is poor. Changes to current web-based health care information regarding SCD care transitions would benefit transitioning youth by providing expectations, knowledge, skills, and tools to increase self-efficacy. ",
doi="10.2196/48924",
url="https://pediatrics.jmir.org/2023/1/e48924"
}


@Article{info:doi/10.2196/41393,
author="Babayan, Katherine
and Keilty, Krista
and Esufali, Jessica
and Grajales III, J. Francisco
and ",
title="An After-Hours Virtual Care Service for Children With Medical Complexity and New Medical Technology: Mixed Methods Feasibility Study",
journal="JMIR Pediatr Parent",
year="2023",
month="Nov",
day="8",
volume="6",
pages="e41393",
keywords="children with medical complexity",
keywords="technology dependence",
keywords="medical devices",
keywords="family caregivers",
keywords="virtual care",
keywords="home and community care",
keywords="emergency department visits",
keywords="enteral feeding tubes",
keywords="hospital-to-home transition",
keywords="feasibility",
keywords="mixed methods",
abstract="Background: Family caregivers (FCs) of children with medical complexity require specialized support to promote the safe management of new medical technologies (eg, gastrostomy tubes) during hospital-to-home transitions. With limited after-hours services available to families in home and community care, medical device complications that arise often lead to increased FC stress and unplanned emergency department (ED) visits. To improve FC experiences, enable safer patient discharge, and reduce after-hours ED visits, this study explores the feasibility of piloting a 24/7 virtual care service (Connected Care Live) with families to provide real-time support by clinicians expert in the use of pediatric home care technologies. Objective: This study aims to establish the economic, operational, and technical feasibility of piloting the expansion of an existing nurse-led after-hours virtual care service offered to home and community care providers to FCs of children with newly inserted medical devices after hospital discharge at Toronto's Hospital for Sick Children (SickKids). Methods: This exploratory study, conducted from October 2020 to August 2021, used mixed data sources to inform service expansion feasibility. Semistructured interviews were conducted with FCs, nurses, and hospital leadership to assess the risks, benefits, and technical and operational requirements for sustainable and cost-effective future service operations. Time and travel savings were estimated using ED visit data in SickKids' electronic medical records (Epic) with a chief complaint of ``medical device problems,'' after-hours medical device inquiries from clinician emails and voicemails, and existing service operational data. Results: A total of 30 stakeholders were interviewed and voiced the need for the proposed service. Safer and more timely management of medical device complications, improved caregiver and provider experiences, and strengthened partnerships were identified as expected benefits, while service demand, nursing practice, and privacy and security were identified as potential risks. A total of 47 inquiries were recorded over 2 weeks from March 26, 2021, to April 8, 2021, with 51\% (24/47) assessed as manageable via service expansion. This study forecasted annual time and travel savings of 558 hours for SickKids and 904 hours and 22,740 km for families. Minimal technical and operational requirements were needed to support service expansion by leveraging an existing platform and clinical staff. Of the 212 ED visits related to ``medical device problems'' over 6 months from September 1, 2020, to February 28, 2021, enteral feeding tubes accounted for nearly two-thirds (n=137, 64.6\%), with 41.6\% (57/137) assessed as virtually manageable. Conclusions: Our findings indicate that it is feasible to pilot the expansion of Connected Care Live to FCs of children with newly inserted enteral feeding tubes. This nurse-led virtual caregiver service is a promising tool to promote safe hospital-to-home transitions, improve FC experiences, and reduce after-hours ED visits. ",
doi="10.2196/41393",
url="https://pediatrics.jmir.org/2023/1/e41393",
url="http://www.ncbi.nlm.nih.gov/pubmed/37938869"
}


@Article{info:doi/10.2196/46363,
author="Ippolito, Christina
and Canthiya, Lathushikka
and Floreani, Amanda
and Luckhart, Kathleen
and Hoffman, Andrea
and McAdam, Laura",
title="Twice-Weekly Outpatient Rehabilitation Intervention for Young Children With Spinal Muscular Atrophy Treated With Genetic-Based Therapies: Protocol for a Feasibility Study",
journal="JMIR Res Protoc",
year="2023",
month="Nov",
day="2",
volume="12",
pages="e46363",
keywords="active rehabilitation",
keywords="atrophy",
keywords="child",
keywords="feasibility trial",
keywords="feasibility",
keywords="genetic-based",
keywords="genetic-based therapy",
keywords="infant",
keywords="occupation therapy",
keywords="pediatric",
keywords="physical therapy",
keywords="physiotherapy",
keywords="pilot trial",
keywords="rehabilitation",
keywords="spinal muscular atrophy",
abstract="Background: Spinal muscular atrophy (SMA) is a progressive neuromuscular disorder that causes muscle weakness and is the leading genetic cause of infant mortality worldwide. While no definitive cure exists, the approval of 3 genetic-based therapies in Canada since 2018 has led to significant improvements in muscle function for children with SMA. With that, there are no evidence-based rehabilitation interventions and minimal evidence on the combined effects of genetic-based therapies and rehabilitation. Objective: This protocol describes the methodology to assess the feasibility of a twice-weekly outpatient rehabilitation intervention focusing on gross and fine motor function to inform the methodology and sample size of a definitive clinical trial. Methods: We will conduct a single-center nonrandomized pilot and feasibility trial to explore an outpatient rehabilitation intervention for children aged 6 months to 3 years with SMA treated with genetic-based therapies. Participation in the study will occur over a 25-week period, with a baseline assessment visit followed by a 12-week intervention period and a 12-week nonintervention period. The rehabilitation intervention comprises weekly physical and occupational therapy for 11 weeks. Assessments will occur at baseline (week 0), end of intervention or early withdrawal (week 12), and follow-up (week 24). Predetermined feasibility indicators will evaluate study feasibility across process (recruitment rates, eligibility criteria, adherence rates, retention rates, questionnaire suitability, and acceptability), resource (time, implementation, and execution), management (materials and data), and scientific (safety, tolerability, and preliminary efficacy) domains. Results: This project was funded in March 2022, and data will be collected between March 2023 and December 2023. Data analysis will occur between January 2024 and March 2024, with publication expected in the fall of 2024. The protocol for the feasibility trial will be considered successful if it meets the success criteria set out for the feasibility indicators. Indicators of specific interest include all process indicators, as well as time. Exploratory indicators will be reported. Pragmatically, the results of the feasibility trial will inform changes to the protocol and the start-up of a definitive multisite trial. Conclusions: This novel twice-weekly outpatient rehabilitation intervention will be the first step toward filling the need for an evidence-based rehabilitation intervention for children with SMA treated with genetic-based therapies. It is expected that consistent and intensive rehabilitation therapy will augment functional gains being observed in this population. In the future, a definitive trial will measure the efficacy of the intervention. Trial Registration: ClinicalTrials.gov NCT05638750; https://clinicaltrials.gov/study/NCT05638750 International Registered Report Identifier (IRRID): DERR1-10.2196/46363 ",
doi="10.2196/46363",
url="https://www.researchprotocols.org/2023/1/e46363",
url="http://www.ncbi.nlm.nih.gov/pubmed/37917140"
}


@Article{info:doi/10.2196/44016,
author="Finlay-Jones, Louise Amy
and Parkinson, Asha
and Sirois, Fuschia
and Perry, Yael
and Boyes, Mark
and Rees, S. Clare",
title="Web-Based Self-Compassion Training to Improve the Well-Being of Youth With Chronic Medical Conditions: Randomized Controlled Trial",
journal="J Med Internet Res",
year="2023",
month="Sep",
day="13",
volume="25",
pages="e44016",
keywords="self-compassion",
keywords="chronic illness",
keywords="adolescent psychology",
keywords="mental health",
keywords="digital interventions",
keywords="internet",
keywords="well-being",
keywords="mobile phone",
abstract="Background: Up to one-third of young people live with chronic physical conditions (eg, diabetes, asthma, and autoimmune disease) that frequently involve recurrent pain, fatigue, activity limitations, stigma, and isolation. These issues may be exacerbated as young people transition through adolescence. Accordingly, young people with chronic illness are at a high risk of psychological distress. Accessible, evidence-based interventions for young people with chronic illnesses are urgently needed to improve well-being, support adaptation, and enhance daily functioning. Self-compassion, which is an adaptive means of relating to oneself during times of difficulty, is a promising intervention target for this population. Objective: This study aims to test the efficacy of a 4-week, self-guided, web-based self-compassion training program for improving well-being among young Australians (aged 16-25 years) living with a chronic medical condition. The primary outcomes were self-compassion, emotion regulation difficulties, and coping; the secondary outcomes were well-being, distress, and quality of life. We also sought to test whether changes in primary outcomes mediated changes in secondary outcomes and gather feedback about the strengths and limitations of the program. Methods: We conducted a single-blind, parallel-group, randomized controlled trial comparing a 4-week, fully automated, web-based self-compassion training program with a waitlist control. Participants were recruited via the internet, and outcomes were self-assessed at 4 (T1) and 12 weeks (T2) after the baseline time point via a web-based survey. A mixed methods approach was used to evaluate the program feedback. Results: Overall, 151 patients (age: mean 21.15, SD 2.77 years; female patients: n=132, 87.4\%) were randomized to the intervention (n=76, 50.3\%) and control (n=75, 49.7\%) groups. The loss--to--follow-up rate was 47.4\%, and program use statistics indicated that only 29\% (22/76) of young people in the experimental group completed 100\% of the program. The main reported barrier to completion was a lack of time. As anticipated, treatment effects were observed for self-compassion (P=.01; partial $\eta$2=0.05; small effect); well-being (P?.001; partial $\eta$2=0.07; medium effect); and distress (P=.003; partial $\eta$2=0.054; small-medium effect) at the posttest time point and maintained at follow-up. Contrary to our hypotheses, no intervention effects were observed for emotion regulation difficulties or maladaptive coping strategies. Improvements in adaptive coping were observed at the posttest time point but were not maintained at follow-up. Self-compassion, but not emotion regulation difficulties or coping, mediated the improvements in well-being. Conclusions: Minimal-contact, web-based self-compassion training can confer mental health benefits on young people with chronic conditions. This group experiences substantial challenges to participation in mental health supports, and program engagement and retention in this trial were suboptimal. Future work should focus on refining the program content, engagement, and delivery to optimize engagement and treatment outcomes for the target group. Trial Registration: Australian New Zealand Clinical Trials Registry 12619000572167; https://tinyurl.com/5n6hevt International Registered Report Identifier (IRRID): RR2-10.1186/s12889-020-8226-7 ",
doi="10.2196/44016",
url="https://www.jmir.org/2023/1/e44016",
url="http://www.ncbi.nlm.nih.gov/pubmed/37703081"
}


@Article{info:doi/10.2196/49999,
author="Tolou-Shams, Marina
and Ramaiya, Megan
and Lara Salas, Jannet
and Ezimora, Ifunanya
and Shumway, Martha
and Duerr Berrick, Jill
and Aguilera, Adrian
and Borsari, Brian
and Dauria, Emily
and Friedling, Naomi
and Holmes, Crystal
and Grandi, Adam",
title="A Family-Based Mental Health Navigator Intervention for Youth in the Child Welfare System: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Sep",
day="12",
volume="12",
pages="e49999",
keywords="randomized clinical trial",
keywords="foster care",
keywords="child welfare--involved youth",
keywords="navigator interventions",
keywords="digital health technology",
keywords="implementation science",
keywords="community engagement",
abstract="Background: Youth in the child welfare system (child welfare--involved [CWI] youth) have high documented rates of mental health symptoms and experience significant disparities in mental health care services access and engagement. Adolescence is a developmental stage that confers increased likelihood of experiencing mental health symptoms and the emergence of disorders that can persist into adulthood. Despite a high documented need for evidence-based mental health services for CWI youth, coordination between child welfare and mental health service systems to increase access to care remains inadequate, and engagement in mental health services is low. Navigator models developed in the health care field to address challenges of service access, fragmentation, and continuity that affect the quality of care provide a promising approach to increase linkage to, and engagement in, mental health services for CWI youth. However, at present, there is no empirically supported mental health navigator model to address the unique and complex mental health needs of CWI youth and their families. Objective: Using a randomized controlled trial, this study aims to develop and test a foster care family navigator (FCFN) model to improve mental health service outcomes for CWI adolescents (aged 12-17 years). Methods: The navigator model leverages an in-person navigator and use of adjunctive digital health technology to engage with, and improve, care coordination, tracking, and monitoring of mental health service needs for CWI youth and families. In total, 80 caregiver-youth dyads will be randomized to receive either the FCFN intervention or standard of care (clinical case management services): 40 (50\%) to FCFN and 40 (50\%) to control. Qualitative exit interviews will inform the feasibility and acceptability of the services received during the 6-month period. The primary trial outcomes are mental health treatment initiation and engagement. Other pre- and postservice outcomes, such as proportion screened and time to screening, will also be evaluated. We hypothesize that youth receiving the FCFN intervention will have higher rates of mental health treatment initiation and engagement than youth receiving standard of care. Results: We propose enrollment of 80 dyads by March 2024, final data collection by September 2024, and the publication of main findings in March 2025. After final data analysis and writing of the results, the resulting manuscripts will be submitted to journals for dissemination. Conclusions: This study will be the first to produce empirically driven conclusions and recommendations for implementing a family mental health navigation model for CWI youth with long-standing and unaddressed disparities in behavioral health services access. The study findings have potential to have large-scale trial applicability and be feasible and acceptable for eventual system implementation and adoption. Trial Registration: ClinicalTrials.gov NCT04506437; https://www.clinicaltrials.gov/study/NCT04506437 International Registered Report Identifier (IRRID): DERR1-10.2196/49999 ",
doi="10.2196/49999",
url="https://www.researchprotocols.org/2023/1/e49999",
url="http://www.ncbi.nlm.nih.gov/pubmed/37698896"
}


@Article{info:doi/10.2196/46735,
author="Jia, Yang Xiao
and Andreou, Pantelis
and Brown, Cary
and Constantin, Evelyn
and Godbout, Roger
and Hanlon-Dearman, Ana
and Ipsiroglu, Osman
and Reid, Graham
and Shea, Sarah
and Smith, M. Isabel
and Zwicker, D. Jennifer
and Weiss, K. Shelly
and Corkum, Penny",
title="An eHealth Program for Insomnia in Children With Neurodevelopmental Disorders (Better Nights, Better Days): Protocol for an
Economic Evaluation of a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Sep",
day="12",
volume="12",
pages="e46735",
keywords="eHealth intervention",
keywords="pediatric insomnia",
keywords="neurodevelopmental disorders",
keywords="attention-deficit/hyperactivity disorder",
keywords="autism spectrum disorder",
keywords="cerebral palsy",
keywords="fetal alcohol spectrum disorder",
keywords="economic evaluation",
keywords="cost-effectiveness",
abstract="Background: Children with neurodevelopmental disorders have a high risk of sleep disturbances, with insomnia being the most common sleep disorder (ie, chronic and frequent difficulties with going and staying asleep). Insomnia adversely affects the well-being of these children and their caregivers. Pediatric sleep experts recommend behavioral interventions as the first-line treatment option for children. Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) is a 5-session eHealth behavioral intervention delivered to parents to improve outcomes (eg, Pediatric Quality of Life Inventory [PedsQL]) for their children (ages 4-12 years) with insomnia and who have a diagnosis of mild to moderate attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, or fetal alcohol spectrum disorder. If cost-effective, BNBD-NDD can be a scalable intervention that provides value to an underserved population. Objective: This protocol outlines an economic evaluation conducted alongside the BNBD-NDD randomized controlled trial (RCT) that aims to assess its costs, efficacy, and cost-effectiveness compared to usual care. Methods: The BNBD-NDD RCT evaluates the impacts of the intervention on children's sleep and quality of life, as well as parents' daytime functioning and psychosocial health. Parent participants were randomized to the BNBD-NDD treatment or to usual care. The economic evaluation assesses outcomes at baseline and 8 months later, which include the PedsQL as the primary measure. Quality of life outcomes facilitate the comparison of competing interventions across different populations and medical conditions. Cost items include the BNBD-NDD intervention and parent-reported usage of private and publicly funded resources for their children's insomnia. The economic evaluation involves a reference case cost-effectiveness analysis to examine the incremental cost of BNBD-NDD per units gained in the PedsQL from the family payer perspective and a cost-consequence analysis from a societal perspective. These analyses will be conducted over an 8-month time horizon. Results: Research funding was obtained from the Kids Brain Health Network in 2015. Ethics were approved by the IWK Health Research Ethics Board and the University of Calgary Conjoint Health Research Ethics Board in January 2019 and June 2022, respectively. The BNBD-NDD RCT data collection commenced in June 2019 and ended in April 2022. The RCT data are currently being analyzed, and data relevant to the economic analysis will be analyzed concurrently. Conclusions: To our knowledge, this will be the first economic evaluation of an eHealth intervention for insomnia in children with neurodevelopmental disorders. This evaluation's findings can inform users and stakeholders regarding the costs and benefits of BNBD-NDD. Trial Registration: ClinicalTrial.gov NCT02694003; https://clinicaltrials.gov/study/NCT02694003 International Registered Report Identifier (IRRID): DERR1-10.2196/46735 ",
doi="10.2196/46735",
url="https://www.researchprotocols.org/2023/1/e46735",
url="http://www.ncbi.nlm.nih.gov/pubmed/37698915"
}


@Article{info:doi/10.2196/50993,
author="Lai, Jin-Shei
and Jensen, E. Sally
and Peipert, Devin John
and Mitchell, A. Sandra
and Garcia, F. Sofia
and Cella, David
and Goldman, Stewart
and Lenzen, Alicia",
title="Using IT to Improve Outcomes for Children Living With Cancer (SyMon-SAYS): Protocol for a Single-Institution Waitlist Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Sep",
day="8",
volume="12",
pages="e50993",
keywords="pediatric, cancer",
keywords="symptom monitoring",
keywords="randomized controlled trial",
keywords="protocol, electronic health record",
keywords="health-related quality of life",
abstract="Background: Children and adolescents with cancer may experience multiple disease- and treatment-related symptoms that negatively affect health-related quality of life. Routine symptom surveillance thus constitutes an important component of supportive care in pediatric oncology. The Symptom Monitoring and Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS) system will administer, score, interpret, and display the results of symptom assessments captured weekly using patient-reported outcomes presented via the electronic health record (EHR) portal between clinic visits in oncology ambulatory settings, when patients are likely to be more symptomatic. This study is testing a digital system for routine symptom surveillance that includes EHR-based reports to clinicians and alerts for severe symptoms. Objective: In this randomized trial, we are examining the effects of the SyMon-SAYS system on perceived barriers to symptom management, self-efficacy, and symptom severity. Better self-management and timely clinical intervention to address symptoms promote adherence to treatment plans, strengthen child and parent self-efficacy, improve interactions between children, parents, and their clinical providers, and optimize clinical outcomes. Methods: The SyMon-SAYS system is integrated into the EHR to streamline the presentation of symptom scores and delivery of alerts for severe symptoms to clinicians using EHR (Epic) messaging functionalities. Children (aged 8 to 17 years) complete the weekly symptom assessment and review the symptom report by logging into the patient portal (Epic MyChart). This single-institution waitlist randomized controlled trial is recruiting 200 children (aged 8-17 years) with cancer and their parents, guardians, or caregivers. Participating dyads are randomly assigned to receive the intervention over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then an 8-week SyMon-SAYS intervention). Analyses will (1) evaluate the efficacy of SyMon-SAYS at week 8 and the maintenance of those effects at week 16; (2) evaluate factors associated with those efficacy outcomes, including contextual factors, adherence to the SyMon-SAYS intervention, demographic characteristics, and clinical factors; and (3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care. Results: Data collection is currently in progress. We hypothesize that at 8 weeks, those receiving the SyMon-SAYS intervention will report decreased parent-perceived barriers to managing their children's symptoms, increased parent and child self-efficacy, decreased child symptom burden, and ultimately better child health-related quality of life, compared to waitlist controls. Feasibility, acceptability, and engagement from the perspectives of the children with cancer, their parents, and their clinicians will be examined using mixed methods. Conclusions: We anticipate that this system will facilitate prompt identification of problematic symptoms. Additionally, we hypothesize that with the availability of graphical symptom reports over time, and timely provider responses, children or parents will become better informed and take an active role in managing their symptoms, which will further improve clinical outcomes. Trial Registration: ClinicalTrials.gov NCT04789720; https://clinicaltrials.gov/study/NCT04789720 International Registered Report Identifier (IRRID): DERR1-10.2196/50993 ",
doi="10.2196/50993",
url="https://www.researchprotocols.org/2023/1/e50993",
url="http://www.ncbi.nlm.nih.gov/pubmed/37682593"
}


@Article{info:doi/10.2196/45836,
author="Chu, Liting
and Shen, Li
and Ma, Chenhuan
and Chen, Jinjin
and Tian, Yuan
and Zhang, Chuncao
and Gong, Zilan
and Li, Mengfan
and Wang, Chengjie
and Pan, Lizhu
and Zhu, Peiying
and Wu, Danmai
and Wang, Yu
and Yu, Guangjun",
title="Effects of a Nonwearable Digital Therapeutic Intervention on Preschoolers With Autism Spectrum Disorder in China: Open-Label Randomized Controlled Trial",
journal="J Med Internet Res",
year="2023",
month="Aug",
day="24",
volume="25",
pages="e45836",
keywords="autism spectrum disorder",
keywords="digital therapy",
keywords="nonwearable",
keywords="preschoolers",
keywords="randomized controlled trial",
keywords="autism",
keywords="neurodevelopmental disorder",
keywords="difficulty with communication",
keywords="social interaction",
keywords="ADHD",
keywords="attention-deficit/hyperactivity disorder",
keywords="digital intervention",
abstract="Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that can cause difficulty with communication and social interactions as well as complicated family dynamics. Digital health interventions can reduce treatment costs and promote healthy lifestyle changes. These therapies can be adjunctive or replace traditional treatments. However, issues with cooperation and compliance prevent preschool patients with ASD from applying these tools. In this open-label, randomized controlled trial, we developed a nonwearable digital therapy called virtual reality--incorporated cognitive behavioral therapy (VR-CBT). Objective: The aim of this study was to assess the adjunctive function of VR-CBT by comparing the effects of VR-CBT plus learning style profile (LSP) intervention with those of LSP-only intervention in preschool children with ASD. Methods: This trial was performed in China on 78 preschool children (age 3-6 years, IQ>70) diagnosed with ASD who were randomized to receive a 20-week VR-CBT plus LSP intervention (intervention group, 39/78, 50\%) or LSP intervention only (control group, 39/78, 50\%). The primary outcome was the change of scores from baseline to week 20, assessed by using the parent-rated Autism Behavior Checklist (ABC). Secondary outcomes included the Childhood Autism Rating Scale (CARS), Attention-Deficit/Hyperactivity Disorder Rating Scale-IV (ADHD-RS-IV), and behavioral performance data (accuracy and reaction time) in go/no-go tasks. All primary and secondary outcomes were analyzed in the intention-to-treat population. Results: After the intervention, there was an intervention effect on total ABC ($\beta$=--5.528; P<.001) and CARS scores ($\beta$=--1.365; P=.02). A similar trend was observed in the ABC subscales: sensory ($\beta$=--1.133; P=.047), relating ($\beta$=--1.512; P=.03), body and object use ($\beta$=--1.211; P=.03), and social and self-help ($\beta$=--1.593; P=.03). The intervention also showed statistically significant effects in improving behavioral performance (go/no-go task, accuracy, $\beta$=2.923; P=.04). Moreover, a significant improvement of ADHD hyperactivity-impulsivity symptoms was observed in 53 children with comorbid ADHD based on ADHD-RS-IV ($\beta$=--1.269; P=.02). No statistically significant intervention effect was detected in the language subscale of ABC ($\beta$=--.080; P=.83). Intervention group girls had larger improvements in ABC subscales, that is, sensory and body and object use and in the CARS score and accuracy of go/no-go task (all P<.05) than the control group girls. Statistically significant intervention effects could be observed in hyperactivity-impulsivity symptoms in the intervention group boys with comorbid ADHD compared with those in the control group boys ($\beta$=--1.333; P=.03). Conclusions: We found potentially positive effects of nonwearable digital therapy plus LSP on core symptoms associated with ASD, leading to a modest improvement in the function of sensory, motor, and response inhibition, while reducing impulsivity and hyperactivity in preschoolers with both ASD and ADHD. VR-CBT was found to be an effective and feasible adjunctive digital tool. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100053165; http://www.chictr.org.cn/showproj.aspx?proj=137016 ",
doi="10.2196/45836",
url="https://www.jmir.org/2023/1/e45836",
url="http://www.ncbi.nlm.nih.gov/pubmed/37616029"
}


@Article{info:doi/10.2196/41574,
author="Gurung, Sitaji
and Simpson, N. Kit
and Grov, Christian
and Rendina, Jonathon H.
and Huang, K. Terry T.
and Budhwani, Henna
and Jones, Scott Stephen
and Dark, Tyra
and Naar, Sylvie",
title="Cardiovascular Risk Assessment Among Adolescents and Youths Living With HIV: Evaluation of Electronic Health Record Findings and Implications",
journal="Interact J Med Res",
year="2023",
month="Aug",
day="16",
volume="12",
pages="e41574",
keywords="cardiovascular risk",
keywords="cluster of differentiation 4 lymphocyte",
keywords="electronic health record",
keywords="viral load",
keywords="youths living with HIV",
abstract="Background: The HIV epidemic remains a major public health concern, particularly among youths living with HIV. While the availability of antiretroviral therapy has significantly improved the health outcomes of people living with HIV, there is growing evidence that youths living with HIV may be at increased risk of cardiovascular disease. However, the underlying mechanisms linking HIV and cardiovascular disease among youths living with HIV remain poorly understood. One potential explanation is that HIV-related biomarkers, including detectable viral load (VL) and low cluster of differentiation 4 (CD4) lymphocyte counts, may contribute to increased cardiovascular risk. Despite the potential importance of these biomarkers, the relationship between HIV-related biomarkers and cardiovascular risk among youths living with HIV has been understudied. Objective: To address this gap, we examined whether detectable VL and low CD4 lymphocyte counts, both of which are indications of unsuppressed HIV, were associated with cardiovascular risk among youths living with HIV. Methods: We analyzed electronic health record data from 7 adolescent HIV clinics in the United States (813 youths living with HIV). We used multivariable linear regression to examine the relationship between detectable VL and CD4 lymphocyte counts of ?200 and cardiovascular risk scores, which were adapted from the gender-specific Framingham algorithm. Results: In our study, nearly half of the participants (366/766, 47.8\%) had detectable VL, indicating unsuppressed HIV, while 8.6\% (51/593) of them had CD4 lymphocyte counts of ?200, suggesting weakened immune function. We found that those with CD4 lymphocyte counts of ?200 had significantly higher cardiovascular risk, as assessed by Cardiac Risk Score2, than those with CD4 lymphocyte counts of >200 (P=.002). After adjusting for demographic and clinical factors, we found that for every 1000-point increase in VL copies/mL, the probability of having cardiovascular risk (Cardiac Risk Score2) increased by 38\%. When measuring the strength of this connection, we observed a minor effect of VL on increased cardiovascular risk ($\beta$=.134, SE 0.014; P=.006). We obtained similar results with Cardiac Risk Score1, but the effect of CD4 lymphocyte counts of ?200 was no longer significant. Overall, our findings suggest that detectable VL is associated with increased cardiovascular risk among youths living with HIV, and that CD4 lymphocyte counts may play a role in this relationship as well. Conclusions: Our study highlights a significant association between unsuppressed HIV, indicated by detectable VL, and increased cardiovascular risk in youths living with HIV. These findings emphasize the importance of implementing interventions that address both VL suppression and cardiovascular risk reduction in this population. By tailoring interventions to meet the unique needs of youths, we can promote overall well-being throughout the HIV care continuum and across the life span. Ultimately, these efforts have the potential to improve the health outcomes and quality of life of youths living with HIV. International Registered Report Identifier (IRRID): RR2-10.2196/11185 ",
doi="10.2196/41574",
url="https://www.i-jmr.org/2023/1/e41574",
url="http://www.ncbi.nlm.nih.gov/pubmed/37585242"
}


@Article{info:doi/10.2196/46341,
author="Pogge, Gabrielle
and Fedele, A. David
and Waters, A. Erika
and Maki, Julia
and Hunleth, M. Jean
and Prabhakaran, Sreekala
and Bowen, J. Deborah
and Shepperd, A. James",
title="Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey",
journal="JMIR Form Res",
year="2023",
month="Aug",
day="2",
volume="7",
pages="e46341",
keywords="asthma",
keywords="children",
keywords="caregivers",
keywords="decision-making",
keywords="intervention",
keywords="asthma exacerbations",
abstract="Background: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. Objective: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. Methods: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that ``most'' interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). Results: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that ``most'' interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). Conclusions: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not. ",
doi="10.2196/46341",
url="https://formative.jmir.org/2023/1/e46341",
url="http://www.ncbi.nlm.nih.gov/pubmed/37531188"
}


@Article{info:doi/10.2196/40219,
author="O'Connor, Antonia
and Tai, Andrew
and Brinn, Malcolm
and Hoang, Hien Amy Nguyen Thuc
and Cataldi, Daniele
and Carson-Chahhoud, Kristin",
title="Co-design of an Augmented Reality Asthma Inhaler Educational Intervention for Children: Development and Usability Study",
journal="JMIR Pediatr Parent",
year="2023",
month="Jul",
day="25",
volume="6",
pages="e40219",
keywords="asthma",
keywords="asthma education",
keywords="pediatric",
keywords="pediatric asthma",
keywords="co-design",
keywords="usability",
keywords="development",
keywords="smartphone",
keywords="tablet",
keywords="augmented reality",
keywords="health education",
keywords="mobile app",
keywords="mobile phone",
abstract="Background: Smartphone and tablet apps that deliver health care education have been identified as effective in improving patient knowledge and treatment adherence in asthma populations. Despite asthma being the most common chronic disease in pediatrics, there are few apps that are targeted specifically for children. Only half of children with asthma have acceptable control of their symptoms, and 40\%-98\% do not use their inhalers correctly. With children being increasingly connected to technology, there is an opportunity to improve asthma inhaler technique education by delivery via smartphone or tablet apps. Augmented reality (AR) technology was used in this study to capitalize on growing technological innovations. Digital health interventions that use a co-design process for development have the highest likelihood of successful uptake and effectiveness on their intended outcomes. Perceived usability also has been shown to improve the effectiveness of education as well as the acceptance of the intervention. Objective: The aims of this study were to describe the co-design process, development, and design outcomes of a smartphone or tablet app that incorporates AR technology to deliver asthma inhaler technique education to children with asthma. This study also aimed to provide a usability evaluation, using the System Usability Scale to inform our work and future research, and recommendations for others performing similar work. Methods: The development of the AR asthma inhaler technique education app was based on an iterative co-design process with likely end users (children with asthma, their caregivers, and health care professionals). This involved multiple stages: recruitment of end users for qualitative interviews and usability testing with a previously designed educational intervention, which used an AR-embedded smartphone or tablet app; ideation of content for a specific asthma inhaler technique education intervention with end users; development of the specific asthma inhaler intervention; and 2 further rounds of interviews and usability testing with the redesign of the initial prototype. Results: We included 16 participants aged 9-45 years. Using the co-design process, the AR asthma inhaler technique education app was designed, incorporating the preferences of end users. After iteration 1, animation was included based on the feedback provided. Iteration 2 feedback resulted in increased AR experiences and the removal of the requirement of a paper-based resource to trigger AR in the third iteration. Throughout all rounds, the ease of use of the app and the novel nature of the intervention were frequently described. The usability of the intervention overall was perceived to be excellent, and the mean System Usability Scale score of the intervention was found to be highest in the final round of evaluation (90.14). Conclusions: The results from this co-design process and usability evaluation will be used to develop a final AR asthma inhaler technique educational intervention, which will be evaluated in the clinical setting. International Registered Report Identifier (IRRID): RR2-10.1177/16094069211042229 ",
doi="10.2196/40219",
url="https://pediatrics.jmir.org/2023/1/e40219",
url="http://www.ncbi.nlm.nih.gov/pubmed/37490325"
}


@Article{info:doi/10.2196/45896,
author="van der Kamp, R. Matti{\`e}nne
and Hengeveld, S. Vera
and Brusse-Keizer, J. Marjolein G.
and Thio, J. Boony
and Tabak, Monique",
title="eHealth Technologies for Monitoring Pediatric Asthma at Home: Scoping Review",
journal="J Med Internet Res",
year="2023",
month="Jul",
day="21",
volume="25",
pages="e45896",
keywords="telemedicine",
keywords="wearable electronic devices",
keywords="asthma",
keywords="child",
keywords="pediatrics",
keywords="internet-based interventions",
keywords="monitoring",
keywords="computers",
keywords="hand-held device",
keywords="medication",
keywords="spirometry",
abstract="Background: eHealth monitoring technologies offer opportunities to more objectively assess symptoms when they appear in daily life. Asthma is the most common chronic disease in childhood with an episodic course, requiring close follow-up of pediatric asthma control to identify disease deterioration, prevent exacerbations, and enhance quality of life. eHealth technologies in pediatric asthma care show promising results regarding feasibility, acceptability, and asthma-related health outcomes. However, broad systematic evaluations of eHealth technologies in pediatric asthma are lacking. Objective: The objective of this scoping review was to identify the types and applications of eHealth technologies for monitoring and treatment in pediatric asthma and explore which monitoring domains show the most relevance or potential for future research. Methods: A scoping review was conducted using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. A systematic and comprehensive search was performed on English papers that investigated the development, validation, or application of eHealth technologies for home monitoring or treatment of pediatric asthma in the following databases: PubMed, Cochrane Library, IEEE, Scopus, CINAHL, PsycINFO, and ACM Digital Library. Two authors independently assessed eligibility and extracted data. Data were presented by a descriptive analysis of characteristics and a narrative report for each eHealth domain. Results: The review included 370 manuscripts. The following 10 monitoring domains were identified: air quality, airway inflammation markers, lung function, physical activity, sleep, audiovisual, other physiological measurements, questionnaires, medication monitoring, and digital environment (ie, digital platforms, applications, websites, and software tools to monitor or support monitoring). Rising numbers of studies were seen, and the numbers accelerated in the last few years throughout most domains, especially medication monitoring and digital environment. Limited studies (35/370, 9.5\%) of multiparameter monitoring strategies, using three or more domains, were found. The number of monitoring validation studies remained stable, while development and intervention studies increased. Intervention outcomes seemed to indicate the noninferiority and potential superiority of eHealth monitoring in pediatric asthma. Conclusions: This systematic scoping review provides a unique overview of eHealth pediatric asthma monitoring studies, and it revealed that eHealth research takes place throughout different monitoring domains using different approaches. The outcomes of the review showed the potency for efficacy of most monitoring domains (especially the domains of medication monitoring, lung function, and digital environment). Future studies could focus on modifying potentially relevant hospital-based diagnostics for the home setting to investigate potential beneficial effects and focus on combining home-monitoring domains to facilitate multiparameter decision-making and personalized clinical decision support. ",
doi="10.2196/45896",
url="https://www.jmir.org/2023/1/e45896",
url="http://www.ncbi.nlm.nih.gov/pubmed/37477966"
}


@Article{info:doi/10.2196/43214,
author="Shouldice, Claire Ainslie
and Beatty, Madison
and Adams, Sherri
and Dharmaraj, Blossom
and Moore, Clara
and Stinson, Nan Jennifer
and Desai, Arti
and Bartlett, Leah
and Culbert, Erin
and Cohen, Eyal
and Orkin, Julia",
title="Caregivers' Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis",
journal="JMIR Pediatr Parent",
year="2023",
month="Jul",
day="5",
volume="6",
pages="e43214",
keywords="care coordination",
keywords="care",
keywords="children with medical complexity",
keywords="children",
keywords="chronic condition",
keywords="electronic data",
keywords="engagement",
keywords="health information exchange",
keywords="medical",
keywords="patient care planning",
keywords="pediatrics",
keywords="usage",
keywords="utilization",
abstract="Background: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. Objective: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. Methods: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2's features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85\%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. Conclusions: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology. ",
doi="10.2196/43214",
url="https://pediatrics.jmir.org/2023/1/e43214",
url="http://www.ncbi.nlm.nih.gov/pubmed/37405834"
}


@Article{info:doi/10.2196/47524,
author="Tsimicalis, Argerie
and Stinson, Jennifer
and Thorstad, Kelly
and Rauch, Frank
and Hamdy, Reggie
and Chougui, Khadidja
and Addab, Sofia
and Palomo, Telma
and Bernstein, Mitchell
and Dahan-Oliel, Noemi
and Veilleux, Louis-Nicolas
and Massochin Nunes Pinto, Laura
and Passos dos Santos, Raissa",
title="The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study",
journal="JMIR Res Protoc",
year="2023",
month="Jun",
day="23",
volume="12",
pages="e47524",
keywords="eHealth program",
keywords="osteogenesis imperfecta",
keywords="self-management",
keywords="youth",
keywords="transition of care",
abstract="Background: Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called ``Teens Taking Charge: Managing OI Online,'' hereafter named ``Teens OI.'' This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. Objective: The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. Methods: A user-centered design is presently in progress to design and develop Teens OI. A ``Website Design and Development Council'' (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. Results: As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. Conclusions: The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths' openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. International Registered Report Identifier (IRRID): DERR1-10.2196/47524 ",
doi="10.2196/47524",
url="https://www.researchprotocols.org/2023/1/e47524",
url="http://www.ncbi.nlm.nih.gov/pubmed/37351933"
}


@Article{info:doi/10.2196/44252,
author="Blake, V. Kathryn
and Antal, Holly
and Bunnell, Timothy H.
and He, Jiaxian
and Henderson, Robert
and Holbrook, T. Janet
and McCahan, M. Suzanne
and Pennington, Chris
and Rogers, Linda
and Shade, David
and Sugar, A. Elizabeth
and Taylor, Alexandra
and Wise, A. Robert
and Wysocki, Tim",
title="Comprehension by Caregivers and Adolescents of Clinical Trial Information Delivered via Multimedia Video Versus Conventional Practice: Nonrandomized Controlled Trial",
journal="JMIR Pediatr Parent",
year="2023",
month="Jun",
day="22",
volume="6",
pages="e44252",
keywords="adolescent",
keywords="clinical trial",
keywords="comprehension",
keywords="informed consent",
keywords="internet",
keywords="multimedia",
abstract="Background: Research participants often misunderstand the required elements of informed consent information, whether provided in written or oral format. Informed consent instruments with embedded evidence-based learning theory principles administered in multimedia electronic formats may improve comprehension and retention. Objective: This study aims to determine whether study information comprehension and retention using an interactive multimedia video consent process was noninferior to comprehension and retention after an in-person face-to-face interaction with a conventional written consent document for caregivers and adolescents enrolled in a clinical trial. Methods: Participants were caregivers and children aged 12 to 17 years who were enrolled in a clinical trial of asthma treatment. Consent information was presented as a multimedia web-based video consent interaction or as a conventional written consent document with in-person interaction between the prospective participants and the study staff. The trial used a parallel nonrandomized noninferiority design that compared the 2 consent methods. Caregivers and adolescents completed a 17-item open-ended comprehension questionnaire (score range 17-51) at enrollment and at the end of the study 20 weeks later. Comprehension and retention were compared between the consent formats. Noninferiority was established if the 95\% CI upper bound of the difference in scores (conventional format minus web-based) was less than the noninferiority margin of 2.4; superiority was established if the upper bound of the CI was <0. Results: In total, 54 caregiver and adolescent dyads completed the interactive multimedia web-based video consent, and 25 dyads completed the conventional consent. Overall, 33\% (26/79) of all adolescents were Black, 57\% (45/79) were male, and 61\% (48/79) had a household income of <US \$60,000 per year. For caregivers, the interactive multimedia web-based format was noninferior to the conventional format at enrollment (difference between the conventional and web-based formats: mean ?0.30, 95\% CI ?2.52 to 1.92) and was superior at the end of the study 20 weeks later (mean ?2.20, 95\% CI ?3.9 to ?0.5). There was a loss of comprehension over 20 weeks (mean ?1.65, 95\% CI ?3.1 to ?0.19) with the conventional format but not with the multimedia web-based format (mean 0.14, 95\% CI ?0.84 to 1.12). For adolescents, the noninferiority of the multimedia web-based format was not established. Conclusions: Caregivers who are considering enrolling their adolescent in an asthma clinical trial have similar comprehension of study information when delivered through an interactive multimedia web-based platform, which incorporates evidence-based learning theory principles, compared with having a conventional in-person, face-to-face discussion. The retention of study information over time was better with the multimedia format for caregivers. Trial Registration: ClinicalTrials.gov NCT02061280; https://clinicaltrials.gov/ct2/show/NCT02061280 and NCT01437995; https://clinicaltrials.gov/ct2/show/NCT01437995 ",
doi="10.2196/44252",
url="https://pediatrics.jmir.org/2023/1/e44252",
url="http://www.ncbi.nlm.nih.gov/pubmed/37347518"
}


@Article{info:doi/10.2196/39720,
author="Bui, An Truong
and Rosenfelt, Scott Cory
and Whitlock, Hope Kerri
and Leclercq, Mickael
and Weber, Savannah
and Droit, Arnaud
and Wiebe, A. Sandra
and Pei, Jacqueline
and Bolduc, V. Francois",
title="Long-term Memory Testing in Children With Typical Development and Neurodevelopmental Disorders: Remote Web-based Image Task Feasibility Study",
journal="JMIR Pediatr Parent",
year="2023",
month="May",
day="8",
volume="6",
pages="e39720",
keywords="memory",
keywords="neurodevelopmental disorder",
keywords="autism spectrum disorder",
keywords="intellectual disability",
keywords="developmental delay",
keywords="hippocampus",
keywords="recognition",
keywords="paired association learning",
keywords="remote testing",
keywords="autism",
keywords="disorder",
keywords="genetics",
keywords="developmental",
keywords="developmental disorder",
keywords="game",
keywords="remote",
keywords="testing",
keywords="diagnose",
keywords="diagnosis",
abstract="Background: Neurodevelopmental disorders (NDD) cause individuals to have difficulty in learning facts, procedures, or social skills. NDD has been linked to several genes, and several animal models have been used to identify potential therapeutic candidates based on specific learning paradigms for long-term and associative memory. In individuals with NDD, however, such testing has not been used so far, resulting in a gap in translating preclinical results to clinical practice. Objective: We aim to assess if individuals with NDD could be tested for paired association learning and long-term memory deficit, as shown in previous animal models. Methods: We developed an image-based paired association task, which can be performed at different time points using remote web-based testing, and evaluated its feasibility in children with typical development (TD), as well as NDD. We included 2 tasks: object recognition as a simpler task and paired association. Learning was tested immediately after training and also the next day for long-term memory. Results: We found that children aged 5-14 years with TD (n=128) and with NDD of different types (n=57) could complete testing using the Memory Game. Children with NDD showed deficits in both recognition and paired association tasks on the first day of learning, in both 5-9--year old (P<.001 and P=.01, respectively) and 10-14--year old groups (P=.001 and P<.001, respectively). The reaction times to stimuli showed no significant difference between individuals with TD or NDD. Children with NDD exhibited a faster 24-hour memory decay for the recognition task than those with TD in the 5-9--year old group. This trend is reversed for the paired association task. Interestingly, we found that children with NDD had their retention for recognition improved and matched with typically developing individuals by 10-14 years of age. The NDD group also showed improved retention deficits in the paired association task at 10-14 years of age compared to the TD group. Conclusions: We showed that web-based learning testing using simple picture association is feasible for children with TD, as well as with NDD. We showed how web-based testing allows us to train children to learn the association between pictures, as shown in immediate test results and those completed 1 day after. This is important as many models for learning deficits in NDD target both short- and long-term memory for therapeutic intervention. We also demonstrated that despite potential confounding factors, such as self-reported diagnosis bias, technical issues, and varied participation, the Memory Game shows significant differences between typically developing children and those with NDD. Future experiments will leverage this potential of web-based testing for larger cohorts and cross-validation with other clinical or preclinical cognitive tasks. ",
doi="10.2196/39720",
url="https://pediatrics.jmir.org/2023/1/e39720",
url="http://www.ncbi.nlm.nih.gov/pubmed/37155237"
}


@Article{info:doi/10.2196/45920,
author="Hjorth-Johansen, Elin
and B{\o}r{\o}sund, Elin
and Martinsen {\O}sten, Ingeborg
and Holmstr{\o}m, Henrik
and Moen, Anne",
title="Acceptability and Initial Adoption of the Heart Observation App for Infants With Congenital Heart Disease: Qualitative Study",
journal="JMIR Form Res",
year="2023",
month="Apr",
day="5",
volume="7",
pages="e45920",
keywords="congenital heart disease",
keywords="readiness for discharge",
keywords="mobile app",
keywords="follow-up, health services",
keywords="mHealth",
abstract="Background: Approximately 1\% of all infants are born with a congenital heart disease (CHD). Internationally CHD remains a major cause of infant death, some of which occur unexpectedly after a gradual deterioration at home. Many parents find it difficult to recognize worsening of symptoms. Objective: This study aims to report the acceptability and initial adoption of a mobile app, the Heart Observation app (HOBS), aiming to support parents' understanding and management of their child's condition and to increase quality in follow-up from health care professionals in complex health care services in Norway. Methods: A total of 9 families were interviewed on discharge from the neonatal intensive care unit and after 1 month at home. The infant's primary nurse, community nurse, and cardiologist were also interviewed regarding their experiences about collaboration with the family. The interviews were analyzed inductively with thematic content analysis. Results: The analysis generated 4 main themes related to acceptability and adoption: (1) Individualize Initial Support, (2) Developing Confidence and Coping, (3) Normalize When Appropriate, and (4) Implementation in a Complex Service Pathway. The receptivity of parents to learn and attend in the intervention differs according to their present situation. Health care professionals emphasized the importance of adapting the introduction and guidance to parents' receptivity to ensure comprehension, self-efficacy, and thereby acceptance before discharge (Individualize Initial Support). Parents perceived that HOBS served them well and nurtured confidence by teaching them what to be aware of. Health care professionals reported most parents as confident and informed. This potential effect increased the possibility of adoption (Developing Confidence and Coping). Parents expressed that HOBS was not an ``everyday app'' and wanted to normalize everyday life when appropriate. Health care professionals suggested differentiating use according to severity and reducing assessments after recovery to adapt the burden of assessments when appropriate (Normalize When Appropriate). Health care professionals' attitude to implement HOBS in their services was positive. They perceived HOBS as useful to systemize guidance, to enhance communication regarding an infant's condition, and to increase understanding of heart defects in health care professionals with sparse experience (Implementation in a Complex Service Pathway). Conclusions: This feasibility study shows that both parents and health care professionals found HOBS as a positive addition to the health care system and follow-up. HOBS was accepted and potentially useful, but health care professionals should guide parents initially to ensure comprehension and adapt timing to parents' receptivity. By doing so, parents may be confident to know what to look for regarding their child's health and cope at home. Differentiating between various diagnoses and severity is important to support normalization when appropriate. Further controlled studies are needed to assess adoption, usefulness, and benefits in the health care system. ",
doi="10.2196/45920",
url="https://formative.jmir.org/2023/1/e45920",
url="http://www.ncbi.nlm.nih.gov/pubmed/37018028"
}


@Article{info:doi/10.2196/42399,
author="de la Vega, Rocio
and Palermo, M. Tonya",
title="Mediating Role of Treatment Perceptions in the Relationship Between Individual Characteristics and Engagement With a Digital Psychological Intervention for Pediatric Chronic Pain: Secondary Data Analysis",
journal="JMIR Pediatr Parent",
year="2023",
month="Mar",
day="6",
volume="6",
pages="e42399",
keywords="treatment adherence",
keywords="treatment perceptions",
keywords="mediators",
keywords="pediatric pain",
keywords="psychological intervention",
keywords="digital health",
keywords="treatment",
keywords="intervention",
keywords="engagement",
keywords="self-management",
keywords="psychological",
abstract="Background: Engagement predicts benefits from self-managed treatments. However, engagement is an important concern in digital interventions, with over 50\% of patients being nonadherent to interventions in chronic conditions such as chronic pain. Little is known about the individual characteristics that contribute to engagement with a digital self-management treatment. Objective: This study tested the mediating role of treatment perceptions (difficulty and helpfulness) in the association between individual baseline characteristics (treatment expectancies and readiness to change) and treatment engagement (online and offline) with a digital psychological intervention for adolescents with chronic pain. Methods: A secondary data analysis of a single-arm trial of Web-based Management of Adolescent Pain, a self-guided internet intervention developed for the management of chronic pain in adolescents, was conducted. Survey data were collected at baseline (T1), midtreatment (ie, 4 weeks after the treatment started; T2), and post treatment (T3). Online engagement was assessed using back-end information on the number of days adolescents accessed the treatment website, while the offline engagement was assessed with the reported frequency of use of skills (ie, pain management strategies) learned at the end of the treatment. Four parallel multiple mediator linear regression models, using ordinary least square regression incorporating the variables were tested. Results: In total, 85 adolescents with chronic pain (12-17 years old, 77\% female) participated. Several mediation models were significant in predicting online engagement. A significant indirect effect was found for the path expectancies--helpfulness--online engagement (effect 0.125; SE 0.098; 95\% CI 0.013-0.389) and for the path precontemplation--helpfulness--online engagement (effect ?1.027; SE 0.650; 95\% CI ?2.518 to ?0.054). Fourteen percent of the variance of online engagement was explained by the model including expectancies as a predictor (F3=3.521; P<.05), whereas 15\% was explained by the model where readiness to change was the predictor (F3=3.934; P<.05). Offline engagement was partially explained in the model including readiness to change as the predictor but with marginal significance (F3=2.719; R2=0.111; P=.05). Conclusions: Treatment perception, specifically, perceived helpfulness, was a mediator of the pathway between both treatment expectancies and readiness to change and online engagement with a digital psychological intervention for chronic pain. Assessing these variables at baseline and midtreatment may help to determine the risk of nonadherence. Further work is needed to confirm these mediation pathways in larger samples. Trial Registration: ClinicalTrials.gov NCT04043962; https://clinicaltrials.gov/ct2/show/NCT04043962 ",
doi="10.2196/42399",
url="https://pediatrics.jmir.org/2023/1/e42399",
url="http://www.ncbi.nlm.nih.gov/pubmed/36877543"
}


@Article{info:doi/10.2196/42881,
author="Parpia, Camilla
and Moore, Clara
and Beatty, Madison
and Miranda, Susan
and Adams, Sherri
and Stinson, Jennifer
and Desai, Arti
and Bartlett, Leah
and Culbert, Erin
and Cohen, Eyal
and Orkin, Julia",
title="Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study",
journal="JMIR Form Res",
year="2023",
month="Feb",
day="23",
volume="7",
pages="e42881",
keywords="secure messaging",
keywords="children with medical complexity",
keywords="patient-physician relationship",
keywords="care coordination",
keywords="partnership",
keywords="email communication",
keywords="online information",
keywords="children",
keywords="pediatrics",
keywords="caregiver",
keywords="information sharing",
keywords="electronic medical record",
abstract="Background: The Connecting2gether (C2) platform is a web and mobile--based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child's care team members (CTMs) in a timely manner. Objective: The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs' and CTMs' perceptions and experiences using secure messaging as a method of communication. Methods: This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child's care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. Results: A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45\% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child's life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. Conclusions: Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child's health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging. ",
doi="10.2196/42881",
url="https://formative.jmir.org/2023/1/e42881",
url="http://www.ncbi.nlm.nih.gov/pubmed/36821356"
}


@Article{info:doi/10.2196/41193,
author="Holtz, Bree
and Mitchell, Katharine",
title="Supporting Parents of Children With Type 1 Diabetes: Experiment Comparing Message and Delivery Types",
journal="JMIR Form Res",
year="2023",
month="Feb",
day="3",
volume="7",
pages="e41193",
keywords="caregiving",
keywords="children",
keywords="development",
keywords="diabetes",
keywords="diagnosis",
keywords="effectiveness",
keywords="email",
keywords="intervention",
keywords="management",
keywords="social support",
keywords="stress",
keywords="support",
keywords="type 1 diabetes",
abstract="Background: Type 1 diabetes (T1D) is a chronic condition that typically affects young age group people and is estimated to afflict approximately 154,000 people younger than 20 years in the United States. Since T1D typically impacts children, parents must play an active role in helping their child manage the condition. This creates a substantial burden and responsibility for the parents. Objective: This pilot study sought to find ways to help parents with children with T1D in coping with stresses related to managing and monitoring their child's disease by providing informational support, either about parenting a child with T1D or general parenting messages through different channels. Methods: Parents (N=120) of children with T1D were recruited through an email listserv through local T1D Facebook groups. A total of 102 participants were included in the analysis. We conducted a 2{\texttimes}2 experimental study over an 8-week period to test 2 types of messages (diabetes specific vs general parenting) and the medium in which the messages were delivered (Facebook vs SMS text message). Diabetes behavior, informational support, emotional support, and quality of life were the main outcomes of interest. Results: The results suggested that the participants in the diabetes message groups showed improvement in diabetes behaviors (F1,99=3.69; P=.05) and were more satisfied with the intervention (F3,98=4.59; P=.005). There were no differences between message and medium groups on informational support, emotional support, or quality of life. Conclusions: The results of this study demonstrate that the medium---Facebook or SMS text messaging---does not matter for parents' perceptions of social support or quality of life. The diabetes message group reported higher levels of disease management. Finally, the groups with the diabetes support messages were more satisfied than those who received general parenting messages. The findings provide starting guidance for the development of social support interventions for this population. ",
doi="10.2196/41193",
url="https://formative.jmir.org/2023/1/e41193",
url="http://www.ncbi.nlm.nih.gov/pubmed/36735338"
}


@Article{info:doi/10.2196/32282,
author="Bocqu{\'e}, Catheline
and Wang, Jingyun
and Rickmann, Annekatrin
and Julich-Haertel, Henrike
and Kaempf, Uwe
and Januschowski, Kai",
title="Gamification to Support Adherence to a Therapeutic Ambylopia Treatment for Children: Retrospective Study Using a Focal Ambient Visual Acuity Stimulation Game",
journal="JMIR Pediatr Parent",
year="2023",
month="Feb",
day="1",
volume="6",
pages="e32282",
keywords="amblyopia",
keywords="children",
keywords="compliance",
keywords="adherence",
keywords="occlusion",
keywords="patching",
keywords="therapeutic game",
keywords="FAVAS",
abstract="Background: The gold standard treatment for amblyopia is patching the better eye. Improvement of visual acuity in the amblyopic eye is significantly impacted by the adherence to the patching therapy. It is known that the overall adherence is rather low. Objective: This retrospective study evaluated whether an updated version of attention-binding digital therapeutic games based on the principle of focal ambient visual acuity stimulation (FAVAS) would result in improved patient adherence in 4- to 16-year-old patients with amblyopia associated with anisometropia or strabismus. Methods: We analyzed electronically pseudonymized recorded data from patients treated with occlusion therapy and FAVAS therapeutic games. One group used an older version (2015) and the other group used a newer version (2020) that provided more attractive therapeutic games with tablet computer functionality. Objective adherence was calculated by comparing the number of minutes using the therapeutic games as monitored in the automatized logbook versus the prescribed number of minutes for using the games. Results: Children in group 2015 (n=138) spent on average 2009.3 (SD 1372.1; range 36-5556) minutes using FAVAS; children in group 2020 (n=129) spent on average 2651.2 (SD 1557.1; range 38-5672) minutes using the newer version. Group 2020 spent on average 641.9 more minutes on FAVAS than group 2015 (t255.49=3.56, P<.001, d=0.45; 95\% CI 0.69-0.20). Although patient adherence was very variable, compared to the 55.0\% (SD 29.4\%) in group 2015, it significantly improved up to 68.5\% (SD 33.7\%) in group 2020 (t254.38=3.48, P=.001, d=0.44; 95\% CI 0.68-0.19). Conclusions: FAVAS 2020, with improved gamification aspect as well as tablet computer functionality, increased adherence significantly compared to the earlier version of FAVAS 2015, indicating that FAVAS 2020 could be an effective approach to support adherence to amblyopia treatment. Trial Registration: German Clinical Trials Register (DRKS) DRKS00017633; https://drks.de/search/de/trial/DRKS00017633 ",
doi="10.2196/32282",
url="https://pediatrics.jmir.org/2023/1/e32282",
url="http://www.ncbi.nlm.nih.gov/pubmed/36724007"
}


@Article{info:doi/10.2196/40231,
author="O'Connor, Antonia
and Tai, Andrew
and Brinn, Malcolm
and Hoang, Hien Amy Nguyen Thuc
and Cataldi, Daniele
and Carson-Chahhoud, Kristin",
title="The Acceptability of Using Augmented Reality as a Mechanism to Engage Children in Asthma Inhaler Technique Training: Qualitative Interview Study With Deductive Thematic Analysis",
journal="JMIR Pediatr Parent",
year="2023",
month="Jan",
day="13",
volume="6",
pages="e40231",
keywords="asthma",
keywords="asthma education",
keywords="pediatric asthma",
keywords="augmented reality",
keywords="mobile phone",
abstract="Background: Inhaled medications or inhalers provide first-line pharmacotherapeutic treatment for patients with asthma for both acute symptomatic relief and long-term management to keep symptoms under control. A good technique requires only basic instruction and training; however, a recent study identified that 92\% of children do not follow all correct steps when using inhalers. There is a growing interest in technology-enhanced asthma education, with evidence demonstrating improvements in knowledge and treatment adherence. Subsequently, there are calls to explore the role of technology-based solutions in improving asthma management and disease outcomes from public health experts, health professionals, and patients with asthma. Augmented reality (AR) technology is an information delivery mechanism with proven efficacy in educational settings. AR displays digital content in a real-world environment using the camera on a smartphone or tablet device to create an immersive learning experience. Objective: The study aimed to evaluate the acceptability of AR as a mechanism for delivering asthma inhaler technique education from the perspective of children with asthma and their parents and health professionals, examined through the theoretical framework of acceptability (TFA). Methods: An asthma education resource enhanced with AR technology was created to provide inhaler technique education to children. An iterative co-design process was undertaken with target end users for a qualitative evaluation. The participants were 8 to 12 years old with asthma, their caregivers, and health professionals who had experience in managing asthma. Qualitative data were obtained through semistructured one-on-one interviews. Deductive thematic analysis using TFA was undertaken using NVivo software 2020 to assess the acceptability of AR as a delivery modality for asthma inhaler technique education. Results: Overall, 6 health care professionals, 5 asthmatic children, and 5 caregivers of children with asthma totaled a sample of 16. The use of AR in the asthma inhaler resource was found to be acceptable when responses were examined in accordance with TFA. Each of the 7 component constructs of TFA was coded throughout the 16 interviews, with perceived effectiveness (157 times) and affective attitude (63 times) coded most frequently. Positive responses included the intervention being accessible, easy to use, interesting, and fitting within the users' value systems. Negative responses included the need to maintain an interest in children and concerns about the loss of face-to-face interaction with health professionals. Conclusions: AR appears to be an acceptable modality for delivering asthma education to children when explored using TFA constructs. Although some challenges were identified with the use of AR, the results were predominantly positive. Future designs of asthma education interventions involving AR should consider the results of this study, and further research should focus on the feasibility, usability, and barriers and facilitators of behavior change to ensure the successful implementation and uptake of AR into clinical settings. International Registered Report Identifier (IRRID): RR2-10.1177/16094069211042229 ",
doi="10.2196/40231",
url="https://pediatrics.jmir.org/2023/1/e40231",
url="http://www.ncbi.nlm.nih.gov/pubmed/36637889"
}


@Article{info:doi/10.2196/38725,
author="Lou, M. Terry
and Zhang, L. Kenneth
and Slesinger, C. No{\"e}l
and Taddeo, Michelle
and Serrano, Eloisa
and Begolka, Smith Wendy
and Capozza, Korey
and Paller, S. Amy
and Griffith, W. James
and Fishbein, B. Anna",
title="Positive Psychology Themes in Interviews of Children With Atopic Dermatitis: Qualitative Study",
journal="JMIR Pediatr Parent",
year="2022",
month="Sep",
day="14",
volume="5",
number="3",
pages="e38725",
keywords="positive psychology",
keywords="PERMA",
keywords="positive emotion, engagement, relationships, meaning, and accomplishment",
keywords="atopic dermatitis",
keywords="pediatric",
keywords="dermatology",
keywords="children",
abstract="Background: Atopic dermatitis is a pruritic chronic condition associated with significant sleep disturbance, inattention, and sometimes behavioral problems. Enhancing resiliency in children with atopic dermatitis may promote coping strategies to improve quality of life. Positive psychology is one strategy that can be used to strengthen resiliency. Objective: Our objective was to identify positive psychology concepts mentioned by children with atopic dermatitis and their parent to inform strategies to strengthen resiliency in children with atopic dermatitis. Methods: A total of 20 patient-parent dyads were interviewed to share their experience with atopic dermatitis to help develop a novel psychologic intervention for atopic dermatitis. Patients were 8 to 17 years old and diagnosed with atopic dermatitis. Trained coders analyzed transcripts using a coding dictionary developed based on Seligman's PERMA (positive emotion, engagement, relationships, meaning, and accomplishment) model of positive psychology. The frequency of unprompted mentions of PERMA themes and relevant quotations was captured. Transcripts were also separately coded for resiliency, which is the ultimate goal of PERMA. Results: Positive psychology concepts were mentioned by 100\% (20/20) of children and 95\% (19/20) of parents. Engagement and relationships, both negative and positive aspects, were the most common unprompted PERMA themes mentioned by children (14/20, 70\%) and parents (13/20, 65\%). Emotion elicited the most negative comments from children (19/20, 95\%) and parents (17/20, 85\%). When analyzed for resiliency, 8 participants were identified with at least one resiliency code. On average, participants with a resiliency code mentioned PERMA concepts 9.1 (SD 4.7) times compared to those who mentioned none (mean 5.9, SD 4.6) (P=.14). When participants were stratified by disease severity, on average, more positive psychology concepts were mentioned by patients with mild atopic dermatitis (mean 13, SD 3.0) than those with moderate symptoms (mean 6.2, SD 4.9) or severe symptoms (mean 6.1, SD 4.0) (P=.03). Conclusions: Among PERMA themes, engagement and relationships are the two most commonly mentioned categories for children with atopic dermatitis. Strategies targeting PERMA such as affirmations and positive reframing may improve psychosocial well-being and resiliency in pediatric atopic dermatitis. Future directions will look at incorporating ``positive medicine'' into atopic dermatitis treatment to not only relieve symptoms but also strengthen positive aspects of life. ",
doi="10.2196/38725",
url="https://pediatrics.jmir.org/2022/3/e38725",
url="http://www.ncbi.nlm.nih.gov/pubmed/36103242"
}


@Article{info:doi/10.2196/36323,
author="Viola, S. Adrienne
and Levonyan-Radloff, Kristine
and Masterson, Margaret
and Manne, L. Sharon
and Hudson, V. Shawna
and Devine, A. Katie",
title="Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study",
journal="JMIR Form Res",
year="2022",
month="Aug",
day="3",
volume="6",
number="8",
pages="e36323",
keywords="self-management",
keywords="peer mentoring",
keywords="cancer survivorship",
keywords="long-term follow-up care",
abstract="Background: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer. ",
doi="10.2196/36323",
url="https://formative.jmir.org/2022/8/e36323",
url="http://www.ncbi.nlm.nih.gov/pubmed/35921137"
}


@Article{info:doi/10.2196/34121,
author="Brons, Annette
and Braam, Katja
and Broekema, Aline
and Timmerman, Annieck
and Millenaar, Karel
and Engelbert, Raoul
and Kr{\"o}se, Ben
and Visser, Bart",
title="Translating Promoting Factors and Behavior Change Principles Into a Blended and Technology-Supported Intervention to Stimulate Physical Activity in Children With Asthma (Foxfit): Design Study",
journal="JMIR Form Res",
year="2022",
month="Jul",
day="25",
volume="6",
number="7",
pages="e34121",
keywords="intervention mapping",
keywords="technology-supported intervention",
keywords="mobile health",
keywords="mHealth",
keywords="tailoring",
keywords="exercise",
keywords="cocreation",
keywords="social participation",
keywords="gamification",
keywords="mobile app",
keywords="web-based dashboard",
keywords="chronic disease",
keywords="mobile phone",
abstract="Background: Children with asthma can decrease the impact of their disease by improving their physical activity (PA). However, health care providers lack interventions for children with asthma that effectively increase their PA levels and achieve behavior change. A technology-supported approach can positively influence PA and physical functioning in children. Objective: The aims of this study were to develop a technology-supported intervention that facilitates health care providers in promoting PA for children (aged 8 to 12 years) with asthma and to systematically describe this developmental process. Methods: Intervention mapping (IM) was applied to develop a blended and technology-supported intervention in cocreation with children with asthma, their parents, and health care providers. In accordance with the IM framework, the following steps were performed: conduct a needs assessment; define the intervention outcome, performance objectives, and change objectives; select theory-based intervention methods and strategies; create components of the intervention and conduct pilot tests; create an implementation plan; and create an evaluation plan. Results: We developed the blended intervention Foxfit that consists of an app with a PA monitor for children (aged 8 to 12 years) with asthma and a web-based dashboard for their health care provider. The intervention focuses on PA in everyday life to improve social participation. Foxfit contains components based on behavior change principles and gamification, including goal setting, rewards, action planning, monitoring, shaping knowledge, a gamified story, personal coaching and feedback, and a tailored approach. An evaluation plan was created to assess the intervention's usability and feasibility for both children and health care providers. Conclusions: The IM framework was very useful for systematically developing a technology-supported intervention and for describing the translational process from scientific evidence, the needs and wishes of future users, and behavior change principles into this intervention. This has led to the technology-supported intervention Foxfit that facilitates health care providers in promoting PA in children with asthma. The structured description of the development process and functional components shows the way behavior change techniques are incorporated in the intervention. Trial Registration: International Clinical Trial Registry Platform NTR6658; https://tinyurl.com/3rxejksf ",
doi="10.2196/34121",
url="https://formative.jmir.org/2022/7/e34121",
url="http://www.ncbi.nlm.nih.gov/pubmed/35877162"
}


@Article{info:doi/10.2196/36878,
author="Wozney, Lori
and Curran, Janet
and Archambault, Patrick
and Cassidy, Christine
and Jabbour, Mona
and Mackay, Rebecca
and Newton, Amanda
and Plint, C. Amy
and Somerville, Mari",
title="Electronic Discharge Communication Tools Used in Pediatric Emergency Departments: Systematic Review",
journal="JMIR Pediatr Parent",
year="2022",
month="Jun",
day="24",
volume="5",
number="2",
pages="e36878",
keywords="emergency department",
keywords="medical informatics",
keywords="pediatric",
keywords="systematic review",
keywords="patient discharge summaries",
keywords="patient-centered care",
keywords="technology",
keywords="hospital",
abstract="Background: Electronic discharge communication tools (EDCTs) are increasingly common in pediatric emergency departments (EDs). These tools have been shown to improve patient-centered communication, support postdischarge care at home, and reduce unnecessary return visits to the ED. Objective: This study aimed to map and assess the evidence base for EDCTs used in pediatric EDs according to their functionalities, intended purpose, implementation context features, and outcomes. Methods: A systematic review was conducted following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) procedures for identification, screening, and eligibility. A total of 7 databases (EBSCO, MEDLINE, CINAHL, PsycINFO, EMBASE Scopus, and Web of Science) were searched for studies published between 1989 and 2021. Studies evaluating discharge communication--related outcomes using electronic tools (eg, text messages, videos, and kiosks) in pediatric EDs were included. In all, 2 researchers independently assessed the eligibility. Extracted data related to study identification, methodology, settings and demographics, intervention features, outcome implementation features, and practice, policy, and research implications. The Mixed Method Appraisal Tool was used to assess methodological quality. The synthesis of results involved structured tabulation, vote counting, recoding into common metrics, inductive thematic analysis, descriptive statistics, and heat mapping. Results: In total, 231 full-text articles and abstracts were screened for review inclusion with 49 reports (representing 55 unique tools) included. In all, 70\% (26/37) of the studies met at least three of five Mixed Method Appraisal Tool criteria. The most common EDCTs were videos, text messages, kiosks, and phone calls. The time required to use the tools ranged from 120 seconds to 80 minutes. The EDCTs were evaluated for numerous presenting conditions (eg, asthma, fracture, head injury, fever, and otitis media) that required a range of at-home care needs after the ED visit. The most frequently measured outcomes were knowledge acquisition, caregiver and patient beliefs and attitudes, and health service use. Unvalidated self-report measures were typically used for measurement. Health care provider satisfaction or system-level impacts were infrequently measured in studies. The directionality of primary outcomes pointed to positive effects for the primary measure (44/55, 80\%) or no significant difference (10/55, 18\%). Only one study reported negative findings, with an increase in return visits to the ED after receiving the intervention compared with the control group. Conclusions: This review is the first to map the broad literature of EDCTs used in pediatric EDs. The findings suggest a promising evidence base, demonstrating that EDCTs have been successfully integrated across clinical contexts and deployed via diverse technological modalities. Although caregiver and patient satisfaction with EDCTs is high, future research should use robust trials using consistent measures of communication quality, clinician experience, cost-effectiveness, and health service use to accumulate evidence regarding these outcomes. Trial Registration: PROSPERO CRD42020157500; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=157500 ",
doi="10.2196/36878",
url="https://pediatrics.jmir.org/2022/2/e36878",
url="http://www.ncbi.nlm.nih.gov/pubmed/35608929"
}


@Article{info:doi/10.2196/39450,
author="Perkins, C. Ryan
and Sawicki, S. Gregory",
title="Author Reply to: Empowering Without Misinforming Adolescents and Young Adults with Cystic Fibrosis. Comment on ``Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study''",
journal="JMIR Pediatr Parent",
year="2022",
month="May",
day="25",
volume="5",
number="2",
pages="e39450",
keywords="Cystic fibrosis",
keywords="Social media",
keywords="mobile health",
keywords="adherence",
keywords="adolescents",
keywords="young adults",
keywords="Medical misinformation",
doi="10.2196/39450",
url="https://pediatrics.jmir.org/2022/2/e39450",
url="http://www.ncbi.nlm.nih.gov/pubmed/35612884"
}


@Article{info:doi/10.2196/33457,
author="Thumber, Navandeep
and Bhandari, Prerana",
title="Empowering Without Misinforming Adolescents and Young Adults with Cystic Fibrosis. Comment on ``Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study''",
journal="JMIR Pediatr Parent",
year="2022",
month="May",
day="25",
volume="5",
number="2",
pages="e33457",
keywords="cystic fibrosis",
keywords="social media",
keywords="mobile health",
keywords="adherence",
keywords="adolescents",
keywords="young adults",
keywords="medical misinformation",
doi="10.2196/33457",
url="https://pediatrics.jmir.org/2022/2/e33457",
url="http://www.ncbi.nlm.nih.gov/pubmed/35612889"
}


@Article{info:doi/10.2196/30260,
author="Hoag, A. Jennifer
and Karst, Jeffrey
and Bingen, Kristin
and Palou-Torres, Akasha
and Yan, Ke",
title="Distracting Through Procedural Pain and Distress Using Virtual Reality and Guided Imagery in Pediatric, Adolescent, and Young Adult Patients: Randomized Controlled Trial",
journal="J Med Internet Res",
year="2022",
month="Apr",
day="18",
volume="24",
number="4",
pages="e30260",
keywords="virtual reality",
keywords="procedural",
keywords="pain",
keywords="anxiety",
keywords="pediatric",
keywords="guided imagery",
abstract="Background: Children with acute and chronic illness undergo frequent, painful, and distressing procedures. Objective: This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response. Methods: Children and young adults were recruited from the hematology, oncology, and blood and marrow transplant clinics at a children's hospital. Each study participant completed the GI and VR intervention during separate but consecutive unsedated procedures. Self-report measures of pain and anxiety were completed before and after the procedures. Results: A total of 50 participants (median age 13 years) completed both interventions. GI and VR performed similarly in the management of procedural pain. Those with high pain catastrophizing reported experiencing less nervousness about pain during procedures that used VR than those using GI. State anxiety declined pre- to postprocedure in both interventions; however, the decrease reached the level of significance during the VR intervention only. Those with high trait anxiety had less pain during GI. Conclusions: In our sample, VR worked as well as GI to manage the pain and distress associated with common procedures experienced by children with acute or chronic illnesses. Children who are primed for pain based on beliefs about pain or because of their history of chronic pain had a better response to VR. GI was a better intervention for those with high trait anxiety. Trial Registration: ClinicalTrials.gov NCT04892160; https://clinicaltrials.gov/ct2/show/NCT04892160 ",
doi="10.2196/30260",
url="https://www.jmir.org/2022/4/e30260",
url="http://www.ncbi.nlm.nih.gov/pubmed/35436209"
}


@Article{info:doi/10.2196/33389,
author="Silva-Lavigne, Nicole
and Valderrama, Alena
and Pelaez, Sandra
and Bransi, Myriam
and Balli, Fabio
and Gervais, Yannick
and Gaudy, Thomas
and Tse, Man Sze",
title="Acceptability of Serious Games in Pediatric Asthma Education and Self-management: Pilot Study",
journal="JMIR Pediatr Parent",
year="2022",
month="Apr",
day="7",
volume="5",
number="2",
pages="e33389",
keywords="asthma",
keywords="pediatrics",
keywords="video games",
keywords="eHealth",
keywords="self-management",
abstract="Background: Asthma is the most common chronic pediatric disease. Despite existing tools to manage asthma, 40\%-55\% of children with asthma experience uncontrolled asthma. Serious games (SGs) represent a novel approach in promoting asthma education and self-management for children. Objective: In this qualitative pilot study with an embedded quantitative design, we aim to use focus groups and questionnaires to describe the perceived role of SGs in different aspects of asthma self-management by children and their parents. These aspects include asthma perception and knowledge, the impact of asthma and barriers to asthma self-management, and the support system for asthma self-management. Methods: A total of 5 children with asthma and their parents were invited to participate in an organized gaming session. Children and their parents completed a pregaming questionnaire on their medical history and asthma knowledge. Then, they were invited to test 4 original SG prototypes, after which the children answered a postgaming questionnaire on their asthma knowledge and perception of the SGs. Children and their parents subsequently participated in parallel focus groups, which were video-recorded or audio-recorded, transcribed verbatim, and analyzed by reaching consensus among members of the research team. Results: The mean age of the children was 10.3 (SD 1.5) years, with 20\% (1/5) of the children being male. Qualitative data from the transcripts were coded into three separate domains: asthma self-management perception and knowledge, impact of asthma and barriers to asthma self-management, and support system for asthma self-management. We specifically explored the perceived roles of SGs within each domain. A key takeaway message was identified for each of these three domains: heterogeneity of asthma knowledge and the ability of SGs to encourage knowledge transfer through games, consequences and limitations of asthma and the ability of SGs to allow for identification and management of real-life situations through games, and insufficient support system and the ability of SGs to encourage playing with others for support and shared knowledge. Conclusions: Our pilot study explored the role of SGs in the self-management of asthma, as perceived by children and their parents. Our findings support the acceptability of SGs in asthma education and self-management in pediatrics and the necessity for future development in this field. ",
doi="10.2196/33389",
url="https://pediatrics.jmir.org/2022/2/e33389",
url="http://www.ncbi.nlm.nih.gov/pubmed/35389354"
}


@Article{info:doi/10.2196/34822,
author="Shore, Josh
and Nalder, Emily
and Hutchison, Michael
and Reed, Nick
and Hunt, Anne",
title="Tele-Active Rehabilitation for Youth With Concussion: Evidence-Based and Theory-Informed Intervention Development",
journal="JMIR Pediatr Parent",
year="2022",
month="Apr",
day="4",
volume="5",
number="2",
pages="e34822",
keywords="concussion",
keywords="pediatrics",
keywords="active rehabilitation",
keywords="telehealth",
keywords="exercise",
keywords="mobile phone",
abstract="Background: Active rehabilitation involving subsymptom threshold exercise combined with education and support promotes recovery in youth with concussion but is typically delivered in person, which may limit accessibility for families because of a lack of services in their communities or logistical challenges to attending in-person sessions. Objective: This paper describes the evidence-based and theory-informed development of the Tele-Active Rehabilitation (Tele-AR) intervention for pediatric concussion, which was specifically designed for remote service delivery. Methods: The intervention was designed by clinician-researchers with experience in pediatric concussion rehabilitation following the Medical Research Council guidance for developing complex interventions. Development involved a critical review of the literature to identify existing evidence, the expansion of the theoretical basis for active rehabilitation, and the modeling of the intervention process and outcomes. Results: Tele-AR is a 6-week home exercise and education and support program facilitated through weekly videoconferencing appointments with a clinician. Exercise consists of low- to moderate-intensity subsymptom threshold aerobic activity and coordination drills that are individualized to participant needs and interests (prescribed for 3 days per week). Education includes the evidence-supported Concussion \& You self-management program, which covers topics related to energy management, nutrition, hydration, sleep hygiene, and return to activity. Elements of self-determination theory are incorporated to support motivation and engagement. We present a logic model describing predicted intervention effects using a biopsychosocial conceptualization of outcomes after concussion. Conclusions: The Tele-AR intervention may help to increase access to care that improves recovery and promotes a timely return to activity in youth with concussion. Future research is needed to evaluate the feasibility and efficacy of this approach. ",
doi="10.2196/34822",
url="https://pediatrics.jmir.org/2022/2/e34822",
url="http://www.ncbi.nlm.nih.gov/pubmed/35377326"
}


@Article{info:doi/10.2196/32420,
author="Cummings, Caroline
and Crochiere, Rebecca
and Lansing, Hughes Amy
and Patel, Riya
and Stanger, Catherine",
title="A Digital Health Program Targeting Physical Activity Among Adolescents With Overweight or Obesity: Open Trial",
journal="JMIR Pediatr Parent",
year="2022",
month="Mar",
day="28",
volume="5",
number="1",
pages="e32420",
keywords="mHealth program",
keywords="physical activity",
keywords="adolescent overweight",
keywords="adolescent obesity",
keywords="incentives",
keywords="mobile phone",
abstract="Background: Prior studies suggest that mobile health physical activity programs that provide only weekly or daily text-based health coaching evidence limit the efficacy in improving physical activity in adolescents with overweight or obesity. It is possible that incentives, combined with health coaching and daily feedback on goal success, may increase program efficacy; however, such programs have not yet been tested with adolescents with overweight and obesity. Objective: This study aims to examine the feasibility and acceptability of a 12-week, incentive-based, mobile health physical activity program with text-based health coaching, goal setting, and self-monitoring for adolescents with overweight or obesity. Program adherence and changes in tracked physical activity (ie, steps and active minutes while wearing a Fitbit [Google LLC]), body mass, and body fat are assessed. Methods: A total of 28 adolescents aged 13 to 18 years with a BMI ?90th percentile participated in the program. Of the 28 participants, 2 (7\%) were lost to follow-up; thus, data from 26 (93\%) participants were used in analyses. Results: Participant-reported acceptability was high, with all mean ratings of text-based coaching, Fitbit use, and the overall program being >5 on a 7-point scale. In addition, 85\% (23/26) of participants reported that they would like to continue to wear the Fitbit. Program adherence was also high, as participants wore the Fitbit on 91.1\% (SD 12.6\%) of days on average and met their weekly goals for an average of 7 (SD 3.5) of 11 possible weeks. There were no demographic (ie, sex, age, and baseline body mass) differences in the percentage of days participants wore their Fitbit. Across the 12-week study, there were significant improvements in tracked daily active minutes (P=.006) and steps (P<.001) and significant pre- to posttest improvements in body fat percentage (P=.04). Conclusions: The pilot program improved adolescent physical activity and physical health. A larger factorial design trial with adaptive daily goals may clarify the role of each program component in driving physical activity. ",
doi="10.2196/32420",
url="https://pediatrics.jmir.org/2022/1/e32420",
url="http://www.ncbi.nlm.nih.gov/pubmed/35343903"
}


@Article{info:doi/10.2196/34166,
author="Cunningham, Chentel
and Sung, Hyelin
and Benoit, James
and Conway, Jennifer
and Scott, D. Shannon",
title="Multimedia Knowledge Translation Tools for Parents About Childhood Heart Failure: Environmental Scan",
journal="JMIR Pediatr Parent",
year="2022",
month="Mar",
day="21",
volume="5",
number="1",
pages="e34166",
keywords="environmental scan",
keywords="pediatrics heart failure",
keywords="parent audience",
keywords="knowledge translation",
keywords="web-based educational tools",
abstract="Background: Childhood heart failure is a factor in many hospital admissions each year. It can impose a steep learning curve for parents who need to learn the key information to care for their child at home. In this study, we conducted an environmental scan to identify and assess web-based knowledge translation tools about childhood heart failure for parent audiences developed within North America. Objective: The aim of this study is to inventory tools publicly available to parents about childhood heart failure from popular web-based venues, assess how each tool communicates health information, and explore how they were developed. Methods: Our search strategy included two commonly used multimedia-based platforms: two app stores (Google Play and Apple App Store) and one search engine (Advanced Google Search). Common search terms were used, and results were uploaded to Microsoft Excel for screening between 2 reviewers. The inclusion criteria for the tools were as follows: content focused on educating parents about their child's heart failure, developed in the English language, and originating within Canada and the United States. A total of 2 reviewers screened the app store and internet search results for relevant tools. Each tool was assessed using the Suitability Assessment of Materials (SAM), a validated tool that objectively assesses the suitability of how health information is communicated to a particular audience. Key informants who were involved in tool development were identified and invited for a qualitative interview using a semistructured format to provide data about the development process. Key themes were identified in the semistructured interview process. Results: Frequencies and SAM percent ratings of eligible tools were reported. No apps exist for parents relating to pediatric heart failure. Overall, 17 relevant internet tools were identified, and their suitability was assessed for the parent audience. Most tools scored well in layout and type, but they scored lower in readability and graphics. Qualitative interviews with key informants revealed three key themes: timely and introductory knowledge, credible and trustworthy knowledge, and challenges and evolution in knowledge. Conclusions: This is the first environmental scan looking for parent tools relating to childhood heart failure in Canada and the United States. Findings from this study reveal that there are no apps on this topic and there is a small number of tools for parents on the internet (n=17). Using the SAM, no tools scored in the superior range, and further work in knowledge translation strategies needs to be done in this area to improve more effective education to parents and caregivers who have a child with heart failure. These findings will inform the development of a new resource on children's heart failure that targets parents and caregiver audiences. ",
doi="10.2196/34166",
url="https://pediatrics.jmir.org/2022/1/e34166",
url="http://www.ncbi.nlm.nih.gov/pubmed/35311676"
}


@Article{info:doi/10.2196/30364,
author="Wilj{\'e}n, Angelica
and Chaplin, Eric John
and Crine, Vanessa
and Jobe, William
and Johnson, Ensa
and Karlsson, Katarina
and Lindroth, Tomas
and Schwarz, Anneli
and Stenmarker, Margaretha
and Thunberg, Gunilla
and {\"O}hl{\'e}n, Joakim
and Nilsson, Stefan",
title="The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach",
journal="JMIR Pediatr Parent",
year="2022",
month="Mar",
day="8",
volume="5",
number="1",
pages="e30364",
keywords="children",
keywords="communication",
keywords="long-term illness",
keywords="mHealth",
keywords="pediatric care",
keywords="person-centered care",
keywords="symptom assessment",
keywords="universal design",
abstract="Background: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. Objective: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. Methods: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. Results: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non--clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. Conclusions: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings. ",
doi="10.2196/30364",
url="https://pediatrics.jmir.org/2022/1/e30364",
url="http://www.ncbi.nlm.nih.gov/pubmed/35258466"
}


@Article{info:doi/10.2196/32129,
author="Simon, L. Stacey
and Kaar, L. Jill
and Talker, Ishaah
and Reich, Jennifer",
title="Evidence-Based Behavioral Strategies in Smartphone Apps for Children's Sleep: Content Analysis",
journal="JMIR Pediatr Parent",
year="2022",
month="Mar",
day="3",
volume="5",
number="1",
pages="e32129",
keywords="pediatrics",
keywords="technology",
keywords="smartphones",
keywords="health behavior",
keywords="sleep applications",
keywords="children",
keywords="mobile health",
keywords="mHealth",
keywords="smartphone applications",
keywords="health applications",
keywords="sleep disorders",
keywords="sleep problems",
keywords="developer descriptions",
keywords="apps",
abstract="Background: Empirically supported treatments for pediatric sleep problems exist, but many families turn to other sources for help with their children's sleep, such as smartphone apps. Sleep apps are easy for families to access, but little evidence exists regarding the validity of the services and information provided in the developer descriptions of the apps. Objective: The goal of this study was to examine the features and claims of developer descriptions of sleep apps for children. Methods: A search of the Apple iTunes store and Google Play was conducted using the terms ``kids sleep,'' ``child sleep,'' and ``baby sleep.'' Data on the type of app, price, user rating, and number of users were collected. Apps were analyzed in comparison with evidence-based behavioral strategies and were thematically coded on the basis of claims provided in developer descriptions. Results: A total of 83 app descriptions were examined, of which only 2 (2.4\%) offered sleep improvement strategies. The majority were sound and light apps (78\%) and 19\% were bedtime games or stories. Only 18 of 83 (21.6\%) apps were identified as containing empirically supported behavioral sleep strategies. Despite this, many apps asserted claims that they will help children ``fall asleep instantly,'' ``cry less and sleep better,'' or improve child development. Conclusions: A large variety of sleep apps exist for use among children, but few include evidence-based behavioral strategies according to the developer descriptions of the apps. Addressing sleep difficulties in children is important to promote physical, cognitive, and emotional development. Collaboration between sleep researchers and technology developers may be beneficial for creating evidence-supported apps to help with children's sleep in the future. ",
doi="10.2196/32129",
url="https://pediatrics.jmir.org/2022/1/e32129",
url="http://www.ncbi.nlm.nih.gov/pubmed/35238787"
}


@Article{info:doi/10.2196/32274,
author="Yoo, Yejong Paul
and Movahed, Mehrnoosh
and Rue, Ishana
and Santos, Dos Carlos Denner
and Majnemer, Annette
and Shikako, Keiko",
title="Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study",
journal="JMIR Pediatr Parent",
year="2022",
month="Feb",
day="25",
volume="5",
number="1",
pages="e32274",
keywords="COVID-19",
keywords="participation",
keywords="childhood disability",
keywords="online leisure",
keywords="app engagement",
keywords="mHealth",
keywords="children",
keywords="parents",
keywords="mobile apps",
keywords="mobile health",
keywords="digital health",
keywords="pandemic",
keywords="online leisure activities",
keywords="user engagement",
keywords="app usability",
abstract="Background: Participation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. Objective: This study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. Methods: We conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users' engagement from May 2020 to February 2021. Results: Active engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2\%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8\%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). Conclusions: The engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app's listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families. ",
doi="10.2196/32274",
url="https://pediatrics.jmir.org/2022/1/e32274",
url="http://www.ncbi.nlm.nih.gov/pubmed/35100129"
}


@Article{info:doi/10.2196/30457,
author="Butler, Sonia
and Sculley, Dean
and Santos, Derek
and Fellas, Antoni
and Giron{\`e}s, Xavier
and Singh-Grewal, Davinder
and Coda, Andrea",
title="Effectiveness of eHealth and mHealth Interventions Supporting Children and Young People Living With Juvenile Idiopathic Arthritis: Systematic Review and Meta-analysis",
journal="J Med Internet Res",
year="2022",
month="Feb",
day="2",
volume="24",
number="2",
pages="e30457",
keywords="eHealth",
keywords="mobile health",
keywords="mHealth",
keywords="juvenile idiopathic arthritis",
keywords="pediatric",
keywords="effectiveness",
keywords="pain",
keywords="physical activity",
keywords="health-related quality of life",
keywords="self-management",
keywords="education",
keywords="mobile phone",
abstract="Background: Juvenile idiopathic arthritis (JIA) management aims to promote remission through timely, individualized, well-coordinated interdisciplinary care using a range of pharmacological, physical, psychological, and educational interventions. However, achieving this goal is workforce-intensive. Harnessing the burgeoning eHealth and mobile health (mHealth) interventions could be a resource-efficient way of supplementing JIA management. Objective: This systematic review aims to identify the eHealth and mHealth interventions that have been proven to be effective in supporting health outcomes for children and young people (aged 1-18 years) living with JIA. Methods: We systematically searched 15 databases (2018-2021). Studies were eligible if they considered children and young people (aged 1-18 years) diagnosed with JIA, an eHealth or mHealth intervention, any comparator, and health outcomes related to the used interventions. Independently, 2 reviewers screened the studies for inclusion and appraised the study quality using the Downs and Black (modified) checklist. Study outcomes were summarized using a narrative, descriptive method and, where possible, combined for a meta-analysis using a random-effects model. Results: Of the 301 studies identified in the search strategy, 15 (5\%) fair-to-good--quality studies met the inclusion criteria, which identified 10 interventions for JIA (age 4-18.6 years). Of these 10 interventions, 5 (50\%) supported symptom monitoring by capturing real-time data using health applications, electronic diaries, or web-based portals to monitor pain or health-related quality of life (HRQoL). Within individual studies, a preference was demonstrated for real-time pain monitoring over recall pain assessments because of a peak-end effect, improved time efficiency (P=.002), and meeting children's and young people's HRQoL needs (P<.001) during pediatric rheumatology consultations. Furthermore, 20\% (2/10) of interventions supported physical activity promotion using a web-based program or a wearable activity tracker. The web-based program exhibited a moderate effect, which increased endurance time, physical activity levels, and moderate to vigorous physical activity (standardized mean difference [SMD] 0.60, SD 0.02-1.18; I2=79\%; P=.04). The final 30\% (3/10) of interventions supported self-management development through web-based programs, or apps, facilitating a small effect, reducing pain intensity (SMD ?0.14, 95\% CI ?0.43 to 0.15; I2=53\%; P=.33), and increasing disease knowledge and self-efficacy (SMD 0.30, 95\% CI 0.03-0.56; I2=74\%; P=.03). These results were not statistically significant. No effect was seen regarding pain interference, HRQoL, anxiety, depression, pain coping, disease activity, functional ability, or treatment adherence. Conclusions: Evidence that supports the inclusion of eHealth and mHealth interventions in JIA management is increasing. However, this evidence needs to be considered cautiously because of the small sample size, wide CIs, and moderate to high statistical heterogeneity. More rigorous research is needed on the longitudinal effects of real-time monitoring, web-based pediatric rheumatologist--children and young people interactions, the comparison among different self-management programs, and the use of wearable technologies as an objective measurement for monitoring physical activity before any recommendations that inform current practice can be given. ",
doi="10.2196/30457",
url="https://www.jmir.org/2022/2/e30457",
url="http://www.ncbi.nlm.nih.gov/pubmed/35107431"
}


@Article{info:doi/10.2196/29857,
author="Lee, Clement
and Zhou, S. Melissa
and Wang, R. Evelyn
and Huber, Matthew
and Lockwood, K. Katie
and Parga, Joanna",
title="Health Care Professional and Caregiver Attitudes Toward and Usage of Medical Podcasting: Questionnaire Study",
journal="JMIR Pediatr Parent",
year="2022",
month="Feb",
day="1",
volume="5",
number="1",
pages="e29857",
keywords="podcasts",
keywords="social media",
keywords="caregiver",
keywords="parent",
keywords="parenting",
keywords="education",
keywords="pediatrics",
keywords="podcasting",
keywords="patient education",
abstract="Background: Podcasts are used increasingly in medicine. There is growing research into the role of podcasts in medical education, but the use of podcasting as a tool for pediatric parent/caregiver health education is largely unexplored. As parents/caregivers seek medical information online, an understanding of parental preferences is needed. Objective: We sought to explore health care professional and parent/caregiver awareness and views on podcasting as a health education tool. Methods: This survey study was conducted and distributed via in-person collection from parents/caregivers (?18 years old) in the waiting room of an academic pediatric primary care clinic, targeted social media promotion, and professional listservs for health care professionals in pediatrics. Statistical analysis included chi-square tests of independence between categorical variables. Results: In total, 125 health care professionals and 126 caregivers completed the survey. Of those surveyed, 81\% (101/125) of health care professionals and 55\% (69/126) of parents/caregivers listened to podcasts (P<.001). Health care professionals and parents/caregivers listed the same top 3 quality indicators for medical podcasts. Podcast listeners were more likely to have higher incomes and use professional websites for information. The survey elicited a variety of reasons for podcast nonengagement. Conclusions: Health care professionals appear to be more engaged in medical education podcasts than parents/caregivers. However, similar factors were valued when evaluating the quality of a pediatric podcast: accuracy, transparency, and credibility. Professional websites may be one avenue to increase podcast uptake. More needs to be done to explore the use of podcasts and digital media for medical information. ",
doi="10.2196/29857",
url="https://pediatrics.jmir.org/2022/1/e29857",
url="http://www.ncbi.nlm.nih.gov/pubmed/35103616"
}


@Article{info:doi/10.2196/28661,
author="Du, Yao
and Choe, Sarah
and Vega, Jennifer
and Liu, Yusa
and Trujillo, Adrienne",
title="Listening to Stakeholders Involved in Speech-Language Therapy for Children With Communication Disorders: Content Analysis of Apple App Store Reviews",
journal="JMIR Pediatr Parent",
year="2022",
month="Jan",
day="21",
volume="5",
number="1",
pages="e28661",
keywords="eHealth",
keywords="mobile health",
keywords="mHealth",
keywords="mobile app",
keywords="communication disorders",
keywords="speech therapy",
keywords="language therapy",
keywords="children",
keywords="mobile phone",
abstract="Background: With the plethora of mobile apps available on the Apple App Store, more speech-language pathologists (SLPs) have adopted apps for speech-language therapy services, especially for pediatric clients. App Store reviews are publicly available data sources that can not only create avenues for communication between technology developers and consumers but also enable stakeholders such as parents and clinicians to share their opinions and view opinions about the app content and quality based on user experiences. Objective: This study examines the Apple App Store reviews from multiple key stakeholders (eg, parents, educators, and SLPs) to identify and understand user needs and challenges of using speech-language therapy apps (including augmentative and alternative communication [AAC] apps) for pediatric clients who receive speech-language therapy services. Methods: We selected 16 apps from a prior interview study with SLPs that covered multiple American Speech-Language-Hearing Association Big Nine competencies, including articulation, receptive and expressive language, fluency, voice, social communication, and communication modalities. Using an automatic Python (Python Software Foundation) crawler developed by our research team and a Really Simple Syndication feed generator provided by Apple, we extracted a total of 721 app reviews from 2009 to 2020. Using qualitative coding to identify emerging themes, we conducted a content analysis of 57.9\% (418/721) reviews and synthesized user feedback related to app features and content, usability issues, recommendations for improvement, and multiple influential factors related to app design and use. Results: Our analyses revealed that key stakeholders such as family members, educators, and individuals with communication disorders have used App Store reviews as a platform to share their experiences with AAC and speech-language apps. User reviews for AAC apps were primarily written by parents who indicated that AAC apps consistently exhibited more usability issues owing to violations of design guidelines in areas of aesthetics, user errors, controls, and customization. Reviews for speech-language apps were primarily written by SLPs and educators who requested and recommended specific app features (eg, customization of visuals, recorded feedback within the app, and culturally diverse character roles) based on their experiences working with a diverse group of pediatric clients with a variety of communication disorders. Conclusions: To our knowledge, this is the first study to compile and analyze publicly available App Store reviews to identify areas for improvement within mobile apps for pediatric speech-language therapy apps from children with communication disorders and different stakeholders (eg, clinicians, parents, and educators). The findings contribute to the understanding of apps for children with communication disorders regarding content and features, app usability and accessibility issues, and influential factors that impact both AAC apps and speech-language apps for children with communication disorders who need speech therapy. ",
doi="10.2196/28661",
url="https://pediatrics.jmir.org/2022/1/e28661",
url="http://www.ncbi.nlm.nih.gov/pubmed/35060912"
}


@Article{info:doi/10.2196/35455,
author="Zanoni, C. Brian
and Archary, Moherndran
and Sibaya, Thobekile
and Goldstein, Madeleine
and Bergam, Scarlett
and Denton, David
and Cordero, Vincente
and Peng, Cynthia
and Psaros, Christina
and Marconi, C. Vincent
and Haberer, E. Jessica",
title="Mobile Phone--Based Intervention Among Adolescents Living With Perinatally Acquired HIV Transitioning from Pediatric to Adult Care: Protocol for the Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA) Study",
journal="JMIR Res Protoc",
year="2022",
month="Jan",
day="21",
volume="11",
number="1",
pages="e35455",
keywords="adolescent",
keywords="mHealth",
keywords="South Africa",
keywords="HIV",
keywords="Social media",
keywords="InTSHA",
keywords="protocol",
keywords="transition support",
keywords="support",
keywords="WhatsApp",
keywords="caregiver",
keywords="health care provider",
abstract="Background: Adolescents living with perinatally acquired HIV often have poor retention in care and viral suppression during the transition from pediatric to adult-based care. Objective: The aim of this study is to evaluate a mobile phone--based intervention, Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA), among adolescents living with perinatally acquired HIV as they transition from pediatric to adult care in South Africa. Methods: InTSHA uses encrypted, closed group chats delivered via WhatsApp (Meta Platforms Inc) to develop peer support and improve communication between adolescents, their caregivers, and health care providers. The intervention is based on formative work with adolescents, caregivers, and health care providers and builds on several existing adolescent support programs as well as the Social-ecological Model of Adolescent and Young Adult Readiness for Transition (SMART). The final InTSHA intervention involves 10 modules conducted weekly through moderated WhatsApp group chats with adolescents and separately with their caregivers. We will randomly assign 80 South African adolescents living with perinatally acquired HIV who are aware of their HIV status and aged between 15 and 19 years to receive either the intervention (n=40) or standard of care (n=40). Results: We will measure acceptability of the intervention as the primary outcome and evaluate feasibility and preliminary effectiveness for retention in care and viral suppression after completion of the intervention and at least 6 months after randomization. In addition, we will measure secondary outcomes evaluating the impact of the InTSHA intervention on peer support, self-esteem, depression, stigma, sexual education, connection to health care providers, and transition readiness. Enrollment began on April 15, 2021. As of December 31, 2021 a total of 78 out of expected 80 participants have been enrolled. Conclusions: If successful, the intervention will be evaluated in a fully powered randomized controlled trial with a larger number of adolescents from urban and rural populations to further evaluate the generalizability of InTSHA. Trial Registration: ClinicalTrials.gov NCT03624413; https://clinicaltrials.gov/ct2/show/NCT03624413 International Registered Report Identifier (IRRID): DERR1-10.2196/35455 ",
doi="10.2196/35455",
url="https://www.researchprotocols.org/2022/1/e35455",
url="http://www.ncbi.nlm.nih.gov/pubmed/35060907"
}


@Article{info:doi/10.2196/31699,
author="Buchanan, Francine
and Lai, Claudia
and Cohen, Eyal
and Milo-Manson, Golda
and Shachak, Aviv",
title="Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis",
journal="J Particip Med",
year="2022",
month="Jan",
day="17",
volume="14",
number="1",
pages="e31699",
keywords="shared decision-making",
keywords="activity theory",
keywords="parental decision-making",
keywords="parenting",
keywords="participatory medicine",
keywords="pediatric",
keywords="caregiving",
abstract="Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values. ",
doi="10.2196/31699",
url="https://jopm.jmir.org/2022/1/e31699",
url="http://www.ncbi.nlm.nih.gov/pubmed/35037890"
}


@Article{info:doi/10.2196/31411,
author="Titgemeyer, Catrin Sarah
and Schaaf, P. Christian",
title="Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns",
journal="JMIR Pediatr Parent",
year="2022",
month="Jan",
day="6",
volume="5",
number="1",
pages="e31411",
keywords="Facebook",
keywords="support group",
keywords="parental support",
keywords="pediatric rare diseases",
keywords="privacy paradox",
keywords="children's privacy",
abstract="Background: Because of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups. Objective: We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment. Methods: We contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey. Results: Of 231 respondents, 87.0\% (n=201) of respondents were female, 12.6\% (n=29) were male, and 0.4\% reported another sex (n=1). Respondents' mean age was 41.56 years (SD 9.375); 91.3\% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7\% (n=138) reported a self-initiated search for the Facebook group, 24.2\% (n=56) received recommendations from their health professionals, and 12.6\% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2\% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members. Conclusions: Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group's privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children's privacy rights in this context. Trial Registration: German Clinical Trials Register DRKS00016067; https://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00016067 ",
doi="10.2196/31411",
url="https://pediatrics.jmir.org/2022/1/e31411",
url="http://www.ncbi.nlm.nih.gov/pubmed/34989690"
}


@Article{info:doi/10.2196/25129,
author="Bezabih, Mequanint Alemitu
and Gerling, Kathrin
and Abebe, Workeabeba
and Abeele, Vanden Vero",
title="Behavioral Theories and Motivational Features Underlying eHealth Interventions for Adolescent Antiretroviral Adherence: Systematic Review",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Dec",
day="10",
volume="9",
number="12",
pages="e25129",
keywords="HIV",
keywords="adolescents",
keywords="ART adherence",
keywords="eHealth",
keywords="health theories",
keywords="behavior change techniques",
keywords="motivational design principles",
abstract="Background: eHealth systems provide new opportunities for the delivery of antiretroviral therapy (ART) adherence interventions for adolescents. They may be more effective if grounded in health behavior theories and behavior change techniques (BCTs). Prior reviews have examined the effectiveness, feasibility, and acceptability of these eHealth systems. However, studies have not systematically explored the use of health behavior theories and BCTs in the design of these applications. Objective: The purpose of this review was to explore whether health behavior theories and BCTs were considered to ground designs of eHealth systems supporting adolescents' (10-24 years) ART adherence. More specifically, we examined which specific theories and BCTs were applied, and how these BCTs were implemented as design features. Additionally, we investigated the quality and effect of eHealth systems. Methods: A systematic search was performed on IEEE Xplore, ACM, ScienceDirect, PubMed, Scopus, and Web of Science databases from 2000 to 2020. Theory use and BCTs were coded using the Theory Coding Scheme and the Behavior Change Technique Taxonomy version 1 (BCTTv1), respectively. Design features were identified using the lenses of motivational design for mobile health (mHealth). The number of BCTs and design features for each eHealth system and their prevalence across all systems were assessed. Results: This review identified 16 eHealth systems aiming to support ART adherence among adolescents. System types include SMS text message reminders (n=6), phone call reminders (n=3), combined SMS text message and phone call reminders (n=1), electronic adherence monitoring devices (n=3), smartphone apps (n=1), smartphone serious games (n=1), gamified smartphone apps (n=1), leveraging existing social media (n=2), web-based applications (n=1), videoconferencing (n=1), and desktop applications (n=1). Nine were grounded in theory, of which 3 used theories extensively. The impact of adolescent developmental changes on ART adherence was not made explicit. A total of 42 different BCTs and 24 motivational design features were used across systems. Ten systems reported positive effects on 1 or more outcomes; however, of these ten systems, only 3 reported exclusively positive effects on all the outcomes they measured. As much as 6 out of 16 reported purely no effect in all the outcomes measured. Conclusions: Basic applications (SMS text messaging and phone calls) were most frequent, although more advanced systems such as mobile apps and games are also emerging. This review indicated gaps in the use of theory and BCTs, and particularly the impact of developmental changes on ART adherence was not adequately considered. Together with adopting a developmental orientation, future eHealth systems should effectively leverage health theories and consider developing more advanced systems that open the door to using BCTs more comprehensively. Overall, the impact of eHealth systems on adolescent ART adherence and its mediators is promising, but conclusive evidence on effect still needs to be provided. ",
doi="10.2196/25129",
url="https://mhealth.jmir.org/2021/12/e25129",
url="http://www.ncbi.nlm.nih.gov/pubmed/34890353"
}


@Article{info:doi/10.2196/27988,
author="Schroeder, Kristin
and Maiarana, James
and Gisiri, Mwitasrobert
and Joo, Emma
and Muiruri, Charles
and Zullig, Leah
and Masalu, Nestory
and Vasudevan, Lavanya",
title="Caregiver Acceptability of Mobile Phone Use for Pediatric Cancer Care in Tanzania: Cross-sectional Questionnaire Study",
journal="JMIR Pediatr Parent",
year="2021",
month="Dec",
day="8",
volume="4",
number="4",
pages="e27988",
keywords="mHealth",
keywords="literacy",
keywords="smartphone use",
keywords="developing countries",
keywords="pediatric cancer",
keywords="cancer",
keywords="pediatrics",
keywords="children",
keywords="parents",
keywords="caregivers",
keywords="mobile health",
keywords="smartphone",
keywords="SMS",
keywords="education",
keywords="knowledge transfer",
keywords="communication",
abstract="Background: There is a 60\% survival gap between children diagnosed with cancer in low- and middle-income countries (LMICs) and those in high-income countries. Low caregiver knowledge about childhood cancer and its treatment results in presentation delays and subsequent treatment abandonment in LMICs. However, in-person education to improve caregiver knowledge can be challenging due to health worker shortages and inadequate training. Due to the rapid expansion of mobile phone use worldwide, mobile health (mHealth) technologies offer an alternative to delivering in-person education. Objective: The aim of this study is to assess patterns of mobile phone ownership and use among Tanzanian caregivers of children diagnosed with cancer as well as their acceptability of an mHealth intervention for cancer education, patient communication, and care coordination. Methods: In July 2017, caregivers of children <18 years diagnosed with cancer and receiving treatment at Bugando Medical Centre (BMC) were surveyed to determine mobile phone ownership, use patterns, technology literacy, and acceptability of mobile phone use for cancer education, patient communication, and care coordination. Descriptive statistics were generated from the survey data by using mean and SD values for continuous variables and percentages for binary or categorical variables. Results: All eligible caregivers consented to participate and completed the survey. Of the 40 caregivers who enrolled in the study, most used a mobile phone (n=34, 85\%) and expressed high acceptability in using these devices to communicate with a health care provider regarding treatment support (n=39, 98\%), receiving laboratory results (n=37, 93\%), receiving reminders for upcoming appointments (n=38, 95\%), and receiving educational information on cancer (n=35, 88\%). Although only 9\% (3/34) of mobile phone owners owned phones with smartphone capabilities, about 74\% (25/34) self-reported they could view and read SMS text messages. Conclusions: To our knowledge, this is the first study to assess patterns of mobile phone ownership and use among caregivers of children with cancer in Tanzania. The high rate of mobile phone ownership and caregiver acceptability for a mobile phone--based education and communication strategy suggests that a mobile phone--based intervention, particularly one that utilizes SMS technology, could be feasible in this setting. ",
doi="10.2196/27988",
url="https://pediatrics.jmir.org/2021/4/e27988",
url="http://www.ncbi.nlm.nih.gov/pubmed/34889763"
}


@Article{info:doi/10.2196/17959,
author="Beerthuizen, Thijs
and Rikkers-Mutsaerts, M. E. R. V.
and Snoeck-Stroband, B. Jiska
and Sont, K. Jacob",
title="The Role of Education, Monitoring, and Symptom Perception in Internet-Based Self-management Among Adolescents With Asthma: Secondary Analysis of a Randomized Controlled Trial",
journal="JMIR Pediatr Parent",
year="2021",
month="Dec",
day="7",
volume="4",
number="4",
pages="e17959",
keywords="web-based monitoring",
keywords="internet self-management",
keywords="adolescents",
keywords="asthma",
keywords="education",
keywords="perception",
abstract="Background: Internet-based self-management programs improve asthma control and the asthma-related quality of life in adults and adolescents. The components of self-management programs include education and the web-based self-monitoring of symptoms; the latter requires adequate perception in order to timely adjust lifestyle or medication or to contact a care provider. Objective: We aimed to test the hypothesis that adherence to education and web-based monitoring and adequate symptom perception are important determinants for the improvement of asthma control in self-management programs. Methods: We conducted a subgroup analysis of the intervention group of a randomized controlled trial, which included adolescents who participated in the internet-based self-management arm. We assessed the impacts that attendance in education sessions, the frequency of web-based monitoring, and the level of perception had on changes in asthma control (Asthma Control Questionnaire [ACQ]) and asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire) from baseline to 12 months after intervention. Results: Adolescents who attended education sessions had significant and clinically relevant improvements in asthma control (ACQ score difference: ?0.6; P=.03) and exhibited a nonsignificant trend of improvement in asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire score difference: ?0.45; P=.15) when compared to those who did not adhere to education. Frequent monitoring alone did not improve asthma control (P=.07) and quality of life (P=.44) significantly, but its combination with education did result in improved ACQ scores (difference: ?0.88; P=.02). There were no significant differences in outcomes between normoperceivers and hypoperceivers. Conclusions: Education, especially in combination with frequent web-based monitoring, is an important determinant for the 1-year outcomes of asthma control in internet-based self-management programs for adolescents with partly controlled and uncontrolled asthma; however, we could not establish the effect of symptom perception. This study provides important knowledge on the effects of asthma education and monitoring in daily life. ",
doi="10.2196/17959",
url="https://pediatrics.jmir.org/2021/4/e17959",
url="http://www.ncbi.nlm.nih.gov/pubmed/34879001"
}


@Article{info:doi/10.2196/26212,
author="Whale, Katie
and Beasant, Lucy
and Wright, J. Anne
and Yardley, Lucy
and Wallace, M. Louise
and Moody, Louise
and Joinson, Carol",
title="A Smartphone App for Supporting the Self-management of Daytime Urinary Incontinence in Adolescents: Development and Formative Evaluation Study of URApp",
journal="JMIR Pediatr Parent",
year="2021",
month="Nov",
day="15",
volume="4",
number="4",
pages="e26212",
keywords="incontinence",
keywords="urinary incontinence",
keywords="digital intervention",
keywords="child health",
keywords="pediatric",
keywords="pediatric incontinence",
keywords="smartphone",
keywords="intervention development",
keywords="mobile phone",
abstract="Background: Daytime urinary incontinence (UI) is common in childhood and often persists into adolescence. UI in adolescence is associated with a range of adverse outcomes, including depressive symptoms, peer victimization, poor self-image, and problems with peer relationships. The first-line conservative treatment for UI is bladder training (standard urotherapy) that aims to establish a regular fluid intake and a timed schedule for toilet visits. The success of bladder training is strongly dependent on good concordance, which can be challenging for young people. Objective: This paper aims to describe the development of a smartphone app (URApp) that aims to improve concordance with bladder training in young people aged 11 to 19 years. Methods: URApp was designed by using participatory co-design methods and was guided by the person-based approach to intervention design. The core app functions were based on clinical guidance and included setting a daily drinking goal that records fluid intake and toilet visits, setting reminders to drink fluids and go to the toilet, and recording progress toward drinking goals. The development of URApp comprised the following four stages: a review of current smartphone apps for UI, participatory co-design workshops with young people with UI for gathering user requirements and developing wireframes, the development of a URApp prototype, and the user testing of the prototype through qualitative interviews with 23 young people with UI or urgency aged 10 to 19 years and 8 clinicians. The app functions and additional functionalities for supporting concordance and behavior change were iteratively optimized throughout the app development process. Results: Young people who tested URApp judged it to be a helpful way of supporting their concordance with a timed schedule for toilet visits and drinking. They reported high levels of acceptability and engagement. Preliminary findings indicated that some young people experienced improvements in their bladder symptoms, including a reduction in UI. Clinicians reported that URApp was clinically appropriate and aligned with the best practice guidelines for bladder training. URApp was deemed age appropriate, with all clinicians reporting that they would use it within their own clinics. Clinicians felt URApp would be of particular benefit to patients whose symptoms were not improving or those who were not engaging with their treatment plans. Conclusions: The next stage is to evaluate URApp in a range of settings, including pediatric continence clinics, primary care, and schools. This research is needed to test whether URApp is an effective (and cost-effective) solution for improving concordance with bladder training, reducing bladder symptoms, and improving the quality of life. ",
doi="10.2196/26212",
url="https://pediatrics.jmir.org/2021/4/e26212",
url="http://www.ncbi.nlm.nih.gov/pubmed/34779780"
}


@Article{info:doi/10.2196/32921,
author="Xiao, Jin
and Luo, Jiebo
and Ly-Mapes, Oriana
and Wu, Tong Tong
and Dye, Timothy
and Al Jallad, Nisreen
and Hao, Peirong
and Ruan, Jinlong
and Bullock, Sherita
and Fiscella, Kevin",
title="Assessing a Smartphone App (AICaries) That Uses Artificial Intelligence to Detect Dental Caries in Children and Provides Interactive Oral Health Education: Protocol for a Design and Usability Testing Study",
journal="JMIR Res Protoc",
year="2021",
month="Oct",
day="22",
volume="10",
number="10",
pages="e32921",
keywords="artificial intelligence",
keywords="smartphone app",
keywords="mDentistry",
keywords="dental caries",
keywords="underserved population",
keywords="mobile dentistry",
abstract="Background: Early childhood caries (ECC) is the most common chronic childhood disease, with nearly 1.8 billion new cases per year worldwide. ECC afflicts approximately 55\% of low-income and minority US preschool children, resulting in harmful short- and long-term effects on health and quality of life. Clinical evidence shows that caries is reversible if detected and addressed in its early stages. However, many low-income US children often have poor access to pediatric dental services. In this underserved group, dental caries is often diagnosed at a late stage when extensive restorative treatment is needed. With more than 85\% of lower-income Americans owning a smartphone, mobile health tools such as smartphone apps hold promise in achieving patient-driven early detection and risk control of ECC. Objective: This study aims to use a community-based participatory research strategy to refine and test the usability of an artificial intelligence--powered smartphone app, AICaries, to be used by children's parents/caregivers for dental caries detection in their children. Methods: Our previous work has led to the prototype of AICaries, which offers artificial intelligence--powered caries detection using photos of children's teeth taken by the parents' smartphones, interactive caries risk assessment, and personalized education on reducing children's ECC risk. This AICaries study will use a two-step qualitative study design to assess the feedback and usability of the app component and app flow, and whether parents can take photos of children's teeth on their own. Specifically, in step 1, we will conduct individual usability tests among 10 pairs of end users (parents with young children) to facilitate app module modification and fine-tuning using think aloud and instant data analysis strategies. In step 2, we will conduct unmoderated field testing for app feasibility and acceptability among 32 pairs of parents with their young children to assess the usability and acceptability of AICaries, including assessing the number/quality of teeth images taken by the parents for their children and parents' satisfaction. Results: The study is funded by the National Institute of Dental and Craniofacial Research, United States. This study received institutional review board approval and launched in August 2021. Data collection and analysis are expected to conclude by March 2022 and June 2022, respectively. Conclusions: Using AICaries, parents can use their regular smartphones to take photos of their children's teeth and detect ECC aided by AICaries so that they can actively seek treatment for their children at an early and reversible stage of ECC. Using AICaries, parents can also obtain essential knowledge on reducing their children's caries risk. Data from this study will support a future clinical trial that evaluates the real-world impact of using this smartphone app on early detection and prevention of ECC among low-income children. International Registered Report Identifier (IRRID): PRR1-10.2196/32921 ",
doi="10.2196/32921",
url="https://www.researchprotocols.org/2021/10/e32921",
url="http://www.ncbi.nlm.nih.gov/pubmed/34529582"
}


@Article{info:doi/10.2196/31281,
author="Mansell, Holly
and Quinn, Declan
and Kelly, E. Lauren
and Szafron, Michael
and Alcorn, Jane",
title="Pharmacokinetics and Perceptions of Children and Young Adults Using Cannabis for Attention-Deficit/Hyperactivity Disorder and Oppositional Defiant Disorder: Protocol for a  Mixed Methods Proof-of-Concept Study",
journal="JMIR Res Protoc",
year="2021",
month="Oct",
day="18",
volume="10",
number="10",
pages="e31281",
keywords="attention-deficit/hyperactivity disorder",
keywords="ADHD",
keywords="oppositional defiant disorder",
keywords="cannabis",
keywords="cannabidiol",
keywords="young adults",
keywords="youths",
keywords="pharmacokinetics",
keywords="marijuana",
abstract="Background: Despite the lack of evidence on the use of cannabis for the treatment of attention-deficit/hyperactivity disorder (ADHD), the growing perception that cannabis is safe has led more patients and caregivers to self-medicate. Some psychiatrists now authorize medicinal cannabis for patients with ADHD with features of oppositional defiant disorder (ODD) to curtail the unregulated (ie, self-medicated) use of recreational cannabis or to offer a therapeutic option to those who continue to experience symptoms after exhausting all other treatment options. Objective: This protocol aims to explore the perceived effectiveness and pharmacokinetics of cannabis in youth and young adults, who are currently taking it as part of their treatment plan for ADHD with features of ODD, under the supervision of a psychiatrist. Methods: Patients between the ages of 12 and 25 years with a diagnosis of ADHD and features of ODD, who are currently taking cannabis herbal extract (at a $\Delta$9-tetrahydrocannabinol [THC]:cannabidiol [CBD] ratio of 1:20) as a treatment adjunct to stimulant pharmacotherapy will be recruited. A sample size of 10-20 individuals is estimated. The study interview will consist of (1) validated symptom rating scales (Swanson,?Nolan, and Pelham-IV Questionnaire [SNAP-IV], 90-item; Patient Health Questionnaire, 9-item [PHQ-9]; and Screen for Child Anxiety Related Emotional Disorders [SCARED] tool to measure symptoms of ADHD and ODD, depression, and anxiety, respectively); (2) a semistructured interview to probe the experiences of using cannabis; and (3) a cannabis side effects survey. A cannabis product sample as well as 2 blood samples (a trough level and 2-hour postdose level) will be collected to measure plasma concentrations of cannabinoids and relevant metabolites (THC, CBD, 11-hydroxy-THC, 7-hydroxy-CBD, cannabichromene, and 11-nor-9-carboxy-THB) using liquid chromatography--tandem mass spectrometry (LC--MS/MS). Self-report rating scales (SNAP-IV, SCARED, and PHQ-9) will be scored in accordance with standard protocols and compared to retrospective scores obtained from the participant's chart. Demographic variables (age, weight, and race), symptom scores, and blood levels (peaks and troughs) of THC, CBD, cannabichromene (CBC), and metabolites will be summarized using descriptive statistics. Relationships between plasma concentrations and symptom scores will be determined using analysis of variance, and multiple regression analysis will be performed to determine associations between plasma concentrations and demographic variables (age, weight, and ethnicity). The qualitative data will be audio-recorded and transcribed and organized into themes. Results: The protocol was approved by the Biomedical Research Ethics Board at the University of Saskatchewan (protocol \#1726), and recruitment began in May 2021. Conclusions: This proof-of-concept study will explore the potential treatment effectiveness of medical cannabis in participants with ADHD and ODD through a mixed methods approach to inform future research in this area. International Registered Report Identifier (IRRID): DERR1-10.2196/31281 ",
doi="10.2196/31281",
url="https://www.researchprotocols.org/2021/10/e31281",
url="http://www.ncbi.nlm.nih.gov/pubmed/34661540"
}


@Article{info:doi/10.2196/23916,
author="Holtz, Bree
and Mitchell, M. Katharine
and Holmstrom, J. Amanda
and Cotten, R. Shelia
and Dunneback, K. Julie
and Jimenez-Vega, Jose
and Ellis, A. Deborah
and Wood, A. Michael",
title="An mHealth-Based Intervention for Adolescents With Type 1 Diabetes and Their Parents: Pilot Feasibility and Efficacy Single-Arm Study",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Sep",
day="14",
volume="9",
number="9",
pages="e23916",
keywords="mobile health (mHealth)",
keywords="adolescents",
keywords="type 1 diabetes",
keywords="mobile phone",
keywords="parent-adolescent",
keywords="chronic disease",
keywords="feasibility",
keywords="diabetes management",
abstract="Background: Type 1 diabetes (T1D) affects more than 165,000 individuals younger than 20 years in the United States of America. The transition from parent management to parent-child team management, with the child taking on increased levels of self-care, can be stressful and is associated with a deterioration in self-management behaviors. Therefore, a mobile app intervention, MyT1DHero, was designed to facilitate diabetes-specific positive parent-adolescent communication and improve diabetes-related outcomes. The MyT1DHero intervention links an adolescent with T1D and their parent through 2 separate app interfaces and is designed to promote positive communication regarding T1D management. Objective: The aim of this pilot study was to determine (1) the initial efficacy of the MyT1DHero intervention in improving diabetes outcomes in adolescents, specifically the hemoglobin A1c (HbA1c) levels, diabetes care adherence, and quality of life, and (2) the adolescents' overall satisfaction with this intervention. Methods: This pilot study included 30 adolescent-parent pairs who used the MyT1DHero app in a 12-week single-arm clinical trial. Participants were recruited from the local pediatric endocrinology subspecialty clinic via snowball sampling. HbA1c levels, diabetes care adherence, quality of life, family conflict, and satisfaction levels were measured and analyzed using paired sample two-sided t tests and linear regression analyses. Results: The final analysis included 25 families. The mean age of the adolescents was 12.28 (SD 1.62) years. Half of the participants (13/25) reported a diabetes diagnosis of less than 5 years. After 12 weeks of the intervention, diabetes care adherence significantly improved (before the study: mean 3.87 [SD 0.59]; after the study: mean 4.19 [SD 0.65]; t21=--2.52, P=.02, d=0.52) as did quality of life (before the study: mean 4.02 [SD 0.84]; after the study: mean 4.27 [SD 0.73]; t24=2.48, P=.01, d=0.32). HbA1c levels (before the study: mean 8.94 [SD 1.46]; after the study: mean 8.87 [SD 1.29]; t24=0.67, P=.51, d=0.04) and family conflict (before the study: mean 2.45 [SD 0.55]; after the study: mean 2.61 [SD 0.45]; t23=0.55, P=.14, d=0.32) changed in the hypothesized direction, but the change was not significant. However, higher use of the mobile app was associated with more improvement in HbA1c levels (F1,20=9.74, P<.005; R2=0.33). Overall, the adolescents were satisfied with the app intervention. Conclusions: In a 12-week pilot study of the mobile app intervention designed to facilitate parent-adolescent communication for improving diabetes outcomes, significant benefits were demonstrated in self-care adherence and quality of life. A randomized controlled trial with a longer intervention is needed to replicate these findings and to determine the stability of the intervention effects. Trial Registration: ClinicalTrials.gov NCT03436628; https://clinicaltrials.gov/ct2/show/NCT03436628 ",
doi="10.2196/23916",
url="https://mhealth.jmir.org/2021/9/e23916",
url="http://www.ncbi.nlm.nih.gov/pubmed/34519670"
}


@Article{info:doi/10.2196/25014,
author="Perkins, C. Ryan
and Gross, Rachel
and Regan, Kayla
and Bishay, Lara
and Sawicki, S. Gregory",
title="Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study",
journal="JMIR Pediatr Parent",
year="2021",
month="Aug",
day="16",
volume="4",
number="3",
pages="e25014",
keywords="cystic fibrosis",
keywords="social media",
keywords="mobile health",
keywords="adherence",
keywords="adolescents",
keywords="young adults",
abstract="Background: For individuals with cystic fibrosis (CF), adolescence and young adulthood are times of significant vulnerability and have been associated with clinical and psychosocial challenges. Social media may offer innovative care delivery solutions to address these challenges. Objective: This study explored motivations and attitudes regarding current social media use and preferences for a social media platform in a sample of adolescents and young adults (AYA) with CF. Methods: A cross-sectional survey was administered to 50 AYA with CF followed at a large pediatric-adult CF center. The survey included questions regarding social media platform utilization, attitudes toward general and CF-specific online activities, and preferences for a CF-specific care delivery platform. Results: YouTube, Snapchat, and Instagram were the most commonly used social media platforms. AYA with CF do not report routinely using social media for health-related information acquisition, social support, or help with adherence. However, their perceptions of social media utilization and preferences for platform development suggest interest in doing so in the future. Conclusions: AYA with CF use social media and expressed interest in the development of a social media platform. Platform development will allow for gaps in health care delivery to be addressed by improving social support and adherence while augmenting current methods of health information acquisition. ",
doi="10.2196/25014",
url="https://pediatrics.jmir.org/2021/3/e25014",
url="http://www.ncbi.nlm.nih.gov/pubmed/34232121"
}


@Article{info:doi/10.2196/24839,
author="Albers, Eline
and Nijhof, N. Linde
and Berkelbach van der Sprenkel, E. Emma
and van de Putte, M. Elise
and Nijhof, L. Sanne
and Knoop, Hans",
title="Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study",
journal="J Med Internet Res",
year="2021",
month="Aug",
day="13",
volume="23",
number="8",
pages="e24839",
keywords="Fatigue in Teenagers on the Internet",
keywords="cognitive behavior therapy",
keywords="fatigue",
keywords="chronic fatigue syndrome",
keywords="adolescents",
keywords="implementation",
abstract="Background: Internet-based cognitive behavior therapy (I-CBT) for adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been shown to be effective in a randomized controlled trial (RCT; Fatigue in Teenagers on the Internet [FITNET]). FITNET can cause a significant reduction in fatigue and disability. Objective: We aimed to investigate whether FITNET treatment implemented in routine clinical care (IMP-FITNET) was as effective, using the outcomes of the FITNET RCT as the benchmark. Methods: Outcomes of CFS/ME adolescents who started IMP-FITNET between October 2012 and March 2018 as part of routine clinical care were compared to the outcomes in the FITNET RCT. The primary outcome was fatigue severity assessed posttreatment. The secondary outcomes were self-reported physical functioning, school attendance, and recovery rates. Clinically relevant deterioration was assessed posttreatment, and for this outcome, a face-to-face CBT trial was used as the benchmark. The attitude of therapists toward the usability of IMP-FITNET was assessed through semistructured interviews. The number of face-to-face consultations during IMP-FITNET was registered. Results: Of the 384 referred adolescents with CFS/ME, 244 (63.5\%) started IMP-FITNET, 84 (21.9\%) started face-to-face CBT, and 56 (14.6\%) were not eligible for CBT. Posttreatment scores for fatigue severity (mean 26.0, SD 13.8), physical functioning (mean 88.2, SD 15.0), and full school attendance (mean 84.3, SD 26.5) fell within the 95\% CIs of the FITNET RCT. Deterioration of fatigue and physical functioning after IMP-FITNET was observed at rates of 1.2\% (n=3) and 4.1\% (n=10), respectively, which is comparable to a waiting list condition (fatigue: 1.2\% vs 5.7\%, $\chi$21=3.5, P=.06; physical functioning: 4.1\% vs 11.4\%, $\chi$21=3.3, P=.07). Moreover, 41 (16.8\%) IMP-FITNET patients made use of face-to-face consultations. Conclusions: IMP-FITNET is an effective and safe treatment for adolescents with CFS/ME in routine clinical care. ",
doi="10.2196/24839",
url="https://www.jmir.org/2021/8/e24839",
url="http://www.ncbi.nlm.nih.gov/pubmed/34397389"
}


@Article{info:doi/10.2196/26867,
author="Zhong, Bu
and Liu, Qian",
title="Medical Insights from Posts About Irritable Bowel Syndrome by Adolescent Patients and Their Parents: Topic Modeling and Social Network Analysis",
journal="J Med Internet Res",
year="2021",
month="Jun",
day="9",
volume="23",
number="6",
pages="e26867",
keywords="irritable bowel syndrome",
keywords="health care forum",
keywords="adolescent",
keywords="parents",
keywords="topic modeling",
keywords="social network analysis",
abstract="Background: Adolescents with irritable bowel syndrome (IBS) are increasingly seeking and sharing information about their symptoms in web-based health care forums. Their posts and those from their parents contain critical insights that can be used by patients, physicians, and caregivers to manage IBS symptoms. Objective: The aim of this study is to examine the posts from adolescent patients and their parents in a health forum, IBS Group, to better understand the key challenges, concerns, and issues of interest to young patients with IBS and their caregivers. Methods: Using topic modeling and social network analysis, in this study, we analyzed all the messages (over 750 topics and 3400 replies) posted on the IBS Group forum from 2010-2019 by adolescents with IBS aged 13-17 years and parents having children with IBS. We first detected 6 major topics in the posts by adolescent patients and parents on teenagers' IBS symptoms and the interaction between the topics. Social network analysis was then performed to gain insights into the nature of web-based interaction patterns among patients and caregivers. Results: Using the Latent Dirichlet Allocation algorithm and a latent Dirichlet allocation visualization tool, this study revealed 6 leading topics of concern in adolescents with IBS: school life, treatment or diet, symptoms, boys' ties to doctors, social or friend issues, and girls' ties to doctors. The top 6 topics in the parents' discussions were school life, girls' issues, boys' issues, diet choice, symptoms, and stress. The analyses show that the adolescent patients themselves are most concerned about the effect of IBS on their everyday activities and social lives. For parents having daughters with IBS, their top concerns were related to the girls' school performance and how much help they received at school. For their sons, the parents were more concerned about the pain and suffering that their sons had to endure. Both parents and adolescents gained social support from the web-based platform. Topic modeling shows that IBS affects teenagers the most in the areas of pain and school life. Furthermore, the issues raised by parents suggest that girls are bothered more by school performance over pain, whereas boys show exactly the opposite: pain is of greater concern than school performance. Conclusions: This study represents the first attempt to leverage both machine learning approaches and social network analysis to identify top IBS concerns from the perspectives of adolescent patients and caregivers in the same health forum. Young patients with IBS must face the challenges of social influences and anxiety associated with this health disorder in addition to physical pain and other symptoms. Boys and girls are affected differently by pain and school performance and view the IBS impacts differently from the parents. ",
doi="10.2196/26867",
url="https://www.jmir.org/2021/6/e26867",
url="http://www.ncbi.nlm.nih.gov/pubmed/34106078"
}


@Article{info:doi/10.2196/27650,
author="Hood, M. Anna
and Strong, Heather
and Nwankwo, Cara
and Johnson, Yolanda
and Peugh, James
and Mara, A. Constance
and Shook, M. Lisa
and Brinkman, B. William
and Real, J. Francis
and Klein, D. Melissa
and Hackworth, Rogelle
and Badawy, M. Sherif
and Thompson, A. Alexis
and Raphael, L. Jean
and Yates, M. Amber
and Smith-Whitley, Kim
and King, A. Allison
and Calhoun, Cecelia
and Creary, E. Susan
and Piccone, M. Connie
and Hildenbrand, K. Aimee
and Reader, K. Steven
and Neumayr, Lynne
and Meier, R. Emily
and Sobota, E. Amy
and Rana, Sohail
and Britto, Maria
and Saving, L. Kay
and Treadwell, Marsha
and Quinn, T. Charles
and Ware, E. Russell
and Crosby, E. Lori",
title="Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="May",
day="21",
volume="10",
number="5",
pages="e27650",
keywords="dissemination",
keywords="decisional uncertainty",
keywords="quality of care",
keywords="child health",
keywords="NHLBI guidelines",
abstract="Background: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/$\beta$0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers' preferences and values, to facilitate a shared discussion with caregivers. Objective: The aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences). Methods: We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes. Results: The Ethics Committee of the Cincinnati Children's Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants. Conclusions: The long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health. Trial Registration: ClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114 International Registered Report Identifier (IRRID): DERR1-10.2196/27650 ",
doi="10.2196/27650",
url="https://www.researchprotocols.org/2021/5/e27650",
url="http://www.ncbi.nlm.nih.gov/pubmed/34018965"
}


@Article{info:doi/10.2196/25811,
author="Kan, Kristin
and Shaunfield, Sara
and Kanaley, Madeleine
and Chadha, Avneet
and Boon, Kathy
and Foster, C. Carolyn
and Morales, Luis
and Labellarte, Patricia
and Vojta, Deneen
and Gupta, S. Ruchi",
title="Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study",
journal="JMIR Pediatr Parent",
year="2021",
month="Apr",
day="23",
volume="4",
number="2",
pages="e25811",
keywords="pediatric asthma",
keywords="digital health",
keywords="outpatient care",
keywords="asthma management",
keywords="pediatric",
keywords="asthma",
keywords="parents",
keywords="caregivers",
keywords="Bluetooth sensors",
keywords="inhaler",
abstract="Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers' experiences of managing their child's asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child's health, (4) emotional impact of the intervention, (5) child's engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma. ",
doi="10.2196/25811",
url="https://pediatrics.jmir.org/2021/2/e25811",
url="http://www.ncbi.nlm.nih.gov/pubmed/33890861"
}


@Article{info:doi/10.2196/24565,
author="Tanner, E. Amanda
and Dowshen, Nadia
and Philbin, M. Morgan
and Rulison, L. Kelly
and Camacho-Gonzalez, Andres
and Lee, Susan
and Moore, J. Shamia
and Fortenberry, Dennis J.
and Hussen, A. Sophia",
title="An Intervention for the Transition From Pediatric or Adolescent to Adult-Oriented HIV Care: Protocol for the Development and Pilot Implementation of iTransition",
journal="JMIR Res Protoc",
year="2021",
month="Apr",
day="7",
volume="10",
number="4",
pages="e24565",
keywords="HIV",
keywords="mHealth",
keywords="transition to adult care",
keywords="young adult",
keywords="feasibility studies",
keywords="retention in care",
keywords="control groups",
keywords="United States",
keywords="telemedicine",
keywords="HIV infections",
keywords="mobile phone",
abstract="Background: In the United States, adolescents and young adults are disproportionately affected by HIV and have poorer HIV-related health outcomes than adults. Health care transition (HCT) from pediatric or adolescent to adult-oriented HIV care is associated with disruptions to youths' care retention, medication adherence, and viral suppression. However, no evidence-based interventions exist to improve HCT outcomes for youth living with HIV. Objective: There are 2 phases of this project. Phase 1 involves the iterative development and usability testing of a Social Cognitive Theory--based mobile health (mHealth) HIV HCT intervention (iTransition). In phase 2, we will conduct a pilot implementation trial to assess iTransition's feasibility and acceptability and to establish preliminary efficacy among youth and provider participants. Methods: The iterative phase 1 development process will involve in-person and virtual meetings and a design team comprising youth living with HIV and health care providers. The design team will both inform the content and provide feedback on the look, feel, and process of the iTransition intervention. In phase 2, we will recruit 100 transition-eligible youth across two clinical sites in Atlanta, Georgia, and Philadelphia, Pennsylvania, to participate in the historical control group (n=50; data collection only) or the intervention group (n=50) in a pilot implementation trial. We will also recruit 28 provider participants across the pediatric or adolescent and adult clinics at the two sites. Data collection will include electronic medical chart abstraction for clinical outcomes as well as surveys and interviews related to demographic and behavioral characteristics; Social Cognitive Theory constructs; and intervention feasibility, acceptability, and use. Analyses will compare historical control and intervention groups in terms of HCT outcomes, including adult care linkage (primary), care retention, and viral suppression (secondary). Interview data will be analyzed using content analysis to understand the experience with use and acceptability. Results: Phase 1 (development) of iTransition research activities began in November 2019 and is ongoing. The data collection for the phase 2 pilot implementation trial is expected to be completed in January 2023. Final results are anticipated in summer 2023. Conclusions: The development and pilot implementation trial of the iTransition intervention will fill an important gap in understanding the role of mHealth interventions to support HCT outcomes for youth living with HIV. International Registered Report Identifier (IRRID): DERR1-10.2196/24565 ",
doi="10.2196/24565",
url="https://www.researchprotocols.org/2021/4/e24565",
url="http://www.ncbi.nlm.nih.gov/pubmed/33825691"
}


@Article{info:doi/10.2196/23960,
author="Zheng, Katherine
and George, Maureen
and Roehlkepartain, Eugene
and Santelli, John
and Bruzzese, Jean-Marie
and Smaldone, Arlene",
title="Developmental Assets of Adolescents and Young Adults With Chronic Illness and Comorbid Depression: Qualitative Study Using YouTube",
journal="JMIR Ment Health",
year="2021",
month="Feb",
day="16",
volume="8",
number="2",
pages="e23960",
keywords="adolescent development",
keywords="chronic disease",
keywords="depression",
keywords="developmental assets",
keywords="positive youth development",
keywords="YouTube",
abstract="Background: Developmental assets provide a framework for optimizing development among adolescents but have not been studied in adolescents with chronic illness and comorbid depression, which is a group at risk for poor health outcomes. YouTube postings provide valuable insights to understand this understudied population. Objective: This study aims to explore asset development from the perspectives of adolescents and young adults (AYAs) with chronic illness and comorbid depression. Methods: YouTube was searched using 12 chronic illnesses (eg, diabetes) coupled with ``depression'' as keywords. Videos were included if they were uploaded by AYAs aged between 11 and 29 years and discussed living with chronic illness and depression during adolescence. Video transcripts were coded deductively for 40 internal and external assets that constitute the Developmental Assets Framework. Categories not captured by deductive coding were identified using conventional content analysis. Categories and their respective assets were labeled as being discussed either negatively or positively. Results: In total, 31 videos from 16 AYAs met the inclusion criteria. A total of 7 asset categories, support, constructive use of time, boundaries and expectations (external assets), identity, commitment to learning, positive values, and social competence (internal assets), reflecting 25 (13 internal; 12 external) assets, were discussed. Internal assets, particularly relating to identity, were commonly discussed by AYAs either in a negative way or fluctuated between positive and negative perspectives. Conclusions: In this sample of AYAs with chronic illness and comorbid depression, internal assets were commonly discussed in a negative way. Future research is needed to better understand how assets develop and if the Developmental Assets Framework adequately represents the experiences of this population. ",
doi="10.2196/23960",
url="http://mental.jmir.org/2021/2/e23960/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33591288"
}


@Article{info:doi/10.2196/20973,
author="Brew-Sam, Nicola
and Chhabra, Madhur
and Parkinson, Anne
and Hannan, Kristal
and Brown, Ellen
and Pedley, Lachlan
and Brown, Karen
and Wright, Kristine
and Pedley, Elizabeth
and Nolan, J. Christopher
and Phillips, Christine
and Suominen, Hanna
and Tricoli, Antonio
and Desborough, Jane",
title="Experiences of Young People and Their Caregivers of Using Technology to Manage Type 1 Diabetes Mellitus: Systematic Literature Review and Narrative Synthesis",
journal="JMIR Diabetes",
year="2021",
month="Feb",
day="2",
volume="6",
number="1",
pages="e20973",
keywords="type 1 diabetes mellitus",
keywords="diabetes",
keywords="children",
keywords="adolescents",
keywords="technology",
keywords="self-management",
keywords="experiences",
keywords="perspectives",
keywords="systematic review",
abstract="Background: In the last decade, diabetes management has begun to transition to technology-based care, with young people being the focus of many technological advances. Yet, detailed insights into the experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus are lacking. Objective: The objective of our study was to describe the breadth of experiences and perspectives on diabetes technology use among children and adolescents with type 1 diabetes mellitus and their caregivers. Methods: This systematic literature review used integrated thematic analysis to guide a narrative synthesis of the included studies. We analyzed the perspectives and experiences of young people with type 1 diabetes mellitus and their caregivers reported in qualitative studies, quantitative descriptive studies, and studies with a mixed methods design. Results: Seventeen articles met the inclusion criteria, and they included studies on insulin pump, glucose sensors, and remote monitoring systems. The following eight themes were derived from the analysis: (1) expectations of the technology prior to use, (2) perceived impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on independence and relationships, (5) perceived usage impact on blood glucose control, (6) device design and features, (7) financial cost, and (8) user satisfaction. While many advantages of using diabetes technology were reported, several challenges for its use were also reported, such as cost, the size and visibility of devices, and the intrusiveness of alarms, which drew attention to the fact that the user had type 1 diabetes mellitus. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Conclusions: Diabetes technologies have improved the quality of life of many young people with type 1 diabetes mellitus and their caregivers. Future design needs to consider the impact of these technologies on relationships between young people and their caregivers, and the impact of device features and characteristics such as size, ease of use, and cost. ",
doi="10.2196/20973",
url="http://diabetes.jmir.org/2021/1/e20973/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33528374"
}


@Article{info:doi/10.2196/25413,
author="Tiase, L. Victoria
and Sward, A. Katherine
and Del Fiol, Guilherme
and Staes, Catherine
and Weir, Charlene
and Cummins, R. Mollie",
title="Patient-Generated Health Data in Pediatric Asthma: Exploratory Study of Providers' Information Needs",
journal="JMIR Pediatr Parent",
year="2021",
month="Jan",
day="26",
volume="4",
number="1",
pages="e25413",
keywords="information needs",
keywords="asthma",
keywords="symptom management",
keywords="mobile health",
keywords="patient-generated health data",
keywords="pediatrics",
keywords="adolescents",
abstract="Background: Adolescents are using mobile health apps as a form of self-management to collect data on symptoms, medication adherence, and activity. Adding functionality to an electronic health record (EHR) to accommodate disease-specific patient-generated health data (PGHD) may support clinical care. However, little is known on how to incorporate PGHD in a way that informs care for patients. Pediatric asthma, a prevalent health issue in the United States with 6 million children diagnosed, serves as an exemplar condition to examine information needs related to PGHD. Objective: In this study we aimed to identify and prioritize asthma care tasks and decisions based on pediatric asthma guidelines and identify types of PGHD that might support the activities associated with the decisions. The purpose of this work is to provide guidance to mobile health app developers and EHR integration. Methods: We searched the literature for exemplar asthma mobile apps and examined the types of PGHD collected. We identified the information needs associated with each decision in accordance with consensus-based guidelines, assessed the suitability of PGHD to meet those needs, and validated our findings with expert asthma providers. Results: We mapped guideline-derived information needs to potential PGHD types and found PGHD that may be useful in meeting information needs. Information needs included types of symptoms, symptom triggers, medication adherence, and inhaler technique. Examples of suitable types of PGHD were Asthma Control Test calculations, exposures, and inhaler use. Providers suggested uncontrolled asthma as a place to focus PGHD efforts, indicating that they preferred to review PGHD at the time of the visit. Conclusions: We identified a manageable list of information requirements derived from clinical guidelines that can be used to guide the design and integration of PGHD into EHRs to support pediatric asthma management and advance mobile health app development. Mobile health app developers should examine PGHD information needs to inform EHR integration efforts. ",
doi="10.2196/25413",
url="http://pediatrics.jmir.org/2021/1/e25413/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33496674"
}


@Article{info:doi/10.2196/19413,
author="Rutland, B. Sarah
and Bergquist, Palmer Rikard
and Hager, Andreas
and Geurs, Robin
and Mims, Cathy
and Gutierrez, H. Hector
and Oates, R. Gabriela",
title="A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings",
journal="JMIR Form Res",
year="2021",
month="Jan",
day="26",
volume="5",
number="1",
pages="e19413",
keywords="cystic fibrosis",
keywords="mHealth",
abstract="Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. Objective: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. Methods: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. Results: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. Conclusions: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users' needs and evidence-based practice recommendations. ",
doi="10.2196/19413",
url="http://formative.jmir.org/2021/1/e19413/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33496667"
}


@Article{info:doi/10.2196/14774,
author="Su, Pen-Hua
and Yang, Chen
and Chao, Mei-Chyn
and Chiang, Chung-Lin",
title="Monitoring Adherence Rate to Growth Hormone Therapy and Growth Outcomes in Taiwanese Children Using Easypod Connect: Observational Study",
journal="JMIR Pediatr Parent",
year="2021",
month="Jan",
day="15",
volume="4",
number="1",
pages="e14774",
keywords="growth hormone",
keywords="adherence",
keywords="easypod",
keywords="eHealth",
abstract="Background: Adherence to growth hormone therapy is difficult to detect reliably. Devices such as easypod have been developed for electronic recording of injections. The easypod connect observational study (ECOS) was an open-label, observational, multinational, phase IV study conducted in 24 countries around the world. The final results from ECOS in the Taiwanese cohort are reported in this paper. Objective: This study aimed to evaluate the adherence and long-term outcomes of growth hormone therapy in pediatric subjects using the easypod electromechanical device. Methods: Subjects (aged 2-18 years or >18 years without fusion of growth plates) who received Saizen (recombinant human growth hormone, somatropin) via the easypod device were enrolled in this study. The primary objective was to assess the level of adherence in subjects receiving Saizen via easypod. Results: In Taiwan, a total of 35 and 13 children fulfilled the criteria of full analysis set and complete analysis set, respectively. The mean (SD) age of the complete analysis set was 12.08 (2.72) years. All subjects were growth hormone--na{\"i}ve, with 38\% (5/13) females. The mean adherence rates of 13 subjects were 87.6\% at 3 months and 84.3\% at 6 months, that of 8 subjects was 81.0\% at 9 months, and that of 4 subjects was 91.6\% at 1 year. After 1 year of treatment, subjects had a median (Q1:Q3) change in height SD score of 0.30 (0.06:0.48), median height velocity of 6.50 (4.33:8.24) cm/year, and median change in height velocity SD score of 1.81 (--0.04:3.52). Conclusions: With the easypod device, patients with inadequate adherence and poor response to treatment can be identified. Adherence to growth hormone therapy administered via easypod was generally high in the first year of treatment but the adherence gradually decreased over time. Overall, growth outcomes after 1 year indicated a positive growth response to growth hormone treatment. Future efforts should be focused on personalized management of adherence by using the easypod system. ",
doi="10.2196/14774",
url="https://pediatrics.jmir.org/2021/1/e14774",
url="http://www.ncbi.nlm.nih.gov/pubmed/33448936"
}


@Article{info:doi/10.2196/15833,
author="Butler, Sonia
and Sculley, Dean
and Santos, Santos Derek
and Fellas, Antoni
and Giron{\`e}s, Xavier
and Singh-Grewal, Davinder
and Coda, Andrea",
title="Usability of eHealth and Mobile Health Interventions by Young People Living With Juvenile Idiopathic Arthritis: Systematic Review",
journal="JMIR Pediatr Parent",
year="2020",
month="Dec",
day="1",
volume="3",
number="2",
pages="e15833",
keywords="juvenile idiopathic arthritis",
keywords="child",
keywords="adolescence",
keywords="eHealth",
keywords="mHealth",
keywords="systematic review",
keywords="mobile phone",
keywords="pain",
keywords="physical activity",
keywords="self-management",
keywords="quality of life",
abstract="Background: Considering the changing landscape of internet use and rising ownership of digital technology by young people, new methods could be considered to improve the current model of juvenile idiopathic arthritis (JIA) management. Objective: This systematic review aims to evaluate the usability of eHealth and mobile health (mHealth) interventions currently available for young people living with JIA. Methods: The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used to oversee this review. We systematically searched 15 databases for 252 potential studies; 2 authors independently screened all quantitative studies reporting the use of eHealth and mHealth interventions for young people (aged 1-18 years) diagnosed with JIA. Studies were excluded if they did not report outcome measures or were reviews, commentaries, or qualitative studies. Study methodological quality was scored using the Down and Black (modified) checklist. A narrative descriptive methodology was used to quantify the data because of heterogeneity across the studies. Results: A total of 11 studies were included in this review, reporting 7 eHealth and mHealth interventions for young people (aged 4-18 years) living with JIA, targeting health issues such as pain, health-related quality of life, physical activity, and chronic disease self-management. The usability of the interventions was facilitated through training and ongoing support. The engagement was promoted by a combination of persuasive influences, and barriers preventing adherence were removed through personal reminders and flexible program schedules to cater to JIA and non-JIA illnesses or other commonly seen activities in childhood. The feedback obtained was that most young people and their parents liked the interventions. Conclusions: The results of this review need to be considered cautiously because of the lack of rigorous testing and heterogeneity, which limits the detailed descriptions of data synthesis. Further research is needed to consider gender differences, associated costs, and the effectiveness of the interventions on health outcomes to better support young people living with JIA. ",
doi="10.2196/15833",
url="http://pediatrics.jmir.org/2020/2/e15833/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33258786"
}


@Article{info:doi/10.2196/22329,
author="Lau, Nancy
and Waldbaum, Shayna
and Parigoris, Ryan
and O'Daffer, Alison
and Walsh, Casey
and Colt, F. Susannah
and Yi-Frazier, P. Joyce
and Palermo, M. Tonya
and McCauley, Elizabeth
and Rosenberg, R. Abby",
title="eHealth and mHealth Psychosocial Interventions for Youths With Chronic Illnesses: Systematic Review",
journal="JMIR Pediatr Parent",
year="2020",
month="Nov",
day="10",
volume="3",
number="2",
pages="e22329",
keywords="pediatrics",
keywords="chronic illness",
keywords="mHealth",
keywords="eHealth",
keywords="psychosocial interventions",
keywords="mental health",
abstract="Background: An estimated 12.8\% of children and adolescents experience chronic health conditions that lead to poor quality of life, adjustment and coping issues, and concurrent mental health problems. Digital health deployment of psychosocial interventions to support youth with chronic illness has become increasingly popular with the advent of the technological advances in the digital age. Objective: Our objectives were to systematically review published efficacy studies of eHealth and mHealth (mobile health) psychosocial interventions for youths with chronic illnesses and review intervention theory and treatment components. Methods: PubMed, Embase, Web of Science, PsycInfo, and Cochrane Database of Systematic Reviews were searched for studies published from 2008 to 2019 of eHealth and mHealth psychosocial interventions designed for children and adolescents with chronic illnesses in which efficacy outcomes were reported. We excluded studies of interventions for caregivers, healthy youth, disease and medication management, and telehealth interventions that function solely as a platform to connect patients to providers via phone, text, or videoconference. Results: We screened 2551 articles and 133 relevant full-text articles. Sixteen efficacy studies with psychosocial and health outcomes representing 12 unique interventions met the inclusion criteria. Of the included studies, 12 were randomized controlled trials and 4 were prospective cohort studies with no comparison group. Most interventions were based in cognitive behavioral theory and designed as eHealth interventions; only 2 were designed as mHealth interventions. All but 2 interventions provided access to support staff via text, phone, email, or discussion forums. The significant heterogeneity in intervention content, intervention structure, medical diagnoses, and outcomes precluded meta-analysis. For example, measurement time points ranged from immediately postcompletion of the mHealth program to 18 months later, and we identified 39 unique outcomes of interest. The majority of included studies (11/16, 69\%) reported significant changes in measured health and/or psychosocial posttreatment outcomes, with small to large effect sizes. Conclusions: Although the available literature on the efficacy of eHealth and mHealth psychosocial interventions for youth with chronic illnesses is limited, preliminary research suggests some evidence of positive treatment responses. Future studies should continue to evaluate whether digital health platforms may be a viable alternative model of delivery to traditional face-to-face approaches. ",
doi="10.2196/22329",
url="http://pediatrics.jmir.org/2020/2/e22329/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33075743"
}


@Article{info:doi/10.2196/23057,
author="Serlachius, Anna
and Badawy, M. Sherif
and Thabrew, Hiran",
title="Psychosocial Challenges and Opportunities for Youth With Chronic Health Conditions During the COVID-19 Pandemic",
journal="JMIR Pediatr Parent",
year="2020",
month="Oct",
day="12",
volume="3",
number="2",
pages="e23057",
keywords="COVID-19",
keywords="coronavirus",
keywords="pandemic",
keywords="chronic illness",
keywords="youth",
keywords="adolescents",
keywords="children",
keywords="psychosocial",
keywords="anxiety",
doi="10.2196/23057",
url="http://pediatrics.jmir.org/2020/2/e23057/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33001834"
}


@Article{info:doi/10.2196/19269,
author="Stiles-Shields, Colleen
and Potthoff, M. Lauren
and Bounds, T. Dawn
and Burns, S. Maureen T.
and Draxler, M. Janel
and Otwell, H. Caitlin
and Wolodiger, D. Emily
and Westrick, Jennifer
and Karnik, S. Niranjan",
title="Harnessing Phones to Target Pediatric Populations with Socially Complex Needs: Systematic Review",
journal="JMIR Pediatr Parent",
year="2020",
month="Aug",
day="26",
volume="3",
number="2",
pages="e19269",
keywords="underserved youth",
keywords="digital mental health",
keywords="mHealth",
keywords="telehealth",
keywords="health disparities",
abstract="Background: Mobile and smartphones are owned and accessed by many, making them a potentially optimal delivery mechanism to reach pediatric patients with socially complex needs (ie, pediatric populations who face overlapping adversities). Objective: To address the specialized needs of youth from such groups, this review synthesized the literature exploring the use of phone-based delivery to access pediatric populations with socially complex needs, targeting mental and behavioral health outcomes. The purpose of this synthesis was to provide recommendations for future research developing phone-based interventions for youth with socially complex needs. Methods: A trained medical librarian conducted the search strategy in the following databases: PubMed, Scopus, CINAHL, PsycINFO, Cochrane CENTRAL Register of Controlled Trials, Cochrane Database of Systematic Reviews, and Google Scholar. Studies targeting youth with socially complex needs were defined by recruiting samples that were primarily from traditionally underserved populations (ie, sex/gender minorities, racial/ethnic background, low socioeconomic status, rural/remote location, and sexual orientation). A systematic narrative framework was utilized and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed (registration number CRD42020141212). Results: A total of 14 studies met the inclusion criteria, with 3 depicting the use of phones to complete assessment and tracking goals and 11 to intervene on mental and behavioral health targets. Conclusions: The literature indicates important directions for future research, including (1) involving diverse and representative teens (ie, the likely users of the interventions), stakeholders, and clinical/research staff; (2) integrating evidence-based therapies with minority-focused theories; (3) harnessing mobile device capabilities; and (4) considering and assessing for potential costs in phones as delivery mechanisms. Trial Registration: PROSPERO CRD42020141212; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=141212 ",
doi="10.2196/19269",
url="http://pediatrics.jmir.org/2020/2/e19269/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32845244"
}


@Article{info:doi/10.2196/18506,
author="Iio, Misa
and Miyaji, Yumiko
and Yamamoto-Hanada, Kiwako
and Narita, Masami
and Nagata, Mayumi
and Ohya, Yukihiro",
title="Beneficial Features of a mHealth Asthma App for Children and Caregivers: Qualitative Study",
journal="JMIR Mhealth Uhealth",
year="2020",
month="Aug",
day="24",
volume="8",
number="8",
pages="e18506",
keywords="children",
keywords="caregivers",
keywords="asthma",
keywords="mobile app",
keywords="proposed beneficial features",
abstract="Background: mHealth and uHealth apps are available for children with asthma and their caregivers. However, previous studies on mHealth apps for children older than 7 years old with asthma are limited, and most studies on asthma apps do not consider interactions involving communication between children and caregivers. Therefore, a prototype mHealth child asthma app was developed for children and their caregivers, with features of tailored feedback messages in continuing self-management and interactions between children and caregivers. Objective: The aim of this study was to identify the beneficial features of a prototype mHealth app developed for children with asthma and their caregivers. Methods: Children diagnosed with persistent asthma by allergy specialists at the National Center for Child Health and Development were recruited. The features of a prototype mHealth app for children with asthma and their caregivers were investigated using semistructured interviews after they tried the app. Data were analyzed using thematic analysis. Content-characteristic words were named and grouped together as categories to explore themes. Results: We recruited 27 children with asthma aged 2 to 12 years and 26 their caregivers. Findings on the good aspects of the app for children older than 7 years old and caregivers suggested 4 themes (confirmation of asthma knowledge, child-caregiver interaction, design of the app, and child's interest), and 6 categories were identified. Findings on the good aspects of app for children 7 to 12 years old and caregivers suggested 5 themes (new knowledge, manga as a Japanese-style comic, child's interest, trigger of self-management, and design and operability), and 11 categories were identified. Findings on the beneficial features of app suggested 6 themes (asthma knowledge, elements for continuous, universal design, notification, monitoring, and functions), and 12 categories were identified. Conclusions: Children with asthma and their caregivers perceived that the good aspects of the app were learning asthma knowledge with fun, including manga; interaction between child and caregiver; and easy-to-read design, such as colors. They wanted not only the asthma knowledge but also the universal design and enhanced elements, monitoring, and notification functions of the app. ",
doi="10.2196/18506",
url="http://mhealth.jmir.org/2020/8/e18506/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32831181"
}


@Article{info:doi/10.2196/19861,
author="Eaton, Cyd
and Comer, Margaret
and Pruette, Cozumel
and Psoter, Kevin
and Riekert, Kristin",
title="Text Messaging Adherence Intervention for Adolescents and Young Adults with Chronic Kidney Disease: Pilot Randomized Controlled Trial and Stakeholder Interviews",
journal="J Med Internet Res",
year="2020",
month="Aug",
day="14",
volume="22",
number="8",
pages="e19861",
keywords="medication adherence",
keywords="mobile health",
keywords="pediatrics",
keywords="kidney diseases",
keywords="kidney",
keywords="mHealth",
keywords="adherence",
keywords="adolescent",
keywords="young adult",
keywords="intervention",
abstract="Background: Up to one-third of adolescents and young adults (11-21 years old) with chronic kidney disease exhibit suboptimal rates of adherence to renal-protective antihypertensive medications. Mobile health interventions may promote higher adherence to these medicines in these individuals, but empirical research is needed to inform best practices for applying these modalities. Objective: In this multiphase investigation, we developed and tested a theoretically informed text messaging intervention based on the COM-B model, a well-established health intervention framework stating that capability, opportunity, and motivation interactively modify health behaviors, to improve participants' antihypertensive medication adherence in a pilot randomized controlled trial. Qualitative data on user experiences were obtained. Methods: In phase 1, intervention messages (Reminder+COM-B Message) were developed via stakeholder engagement of participants and pediatric nephrologists. In phase 2, the Reminder+COM-B Message intervention was tested against a Reminder-only Message active control condition in an 8-week pilot randomized controlled trial. The primary outcome was daily electronically monitored antihypertensive medication adherence and secondary outcomes included pre-post participant surveys of adherence self-efficacy, adherence barriers, outcome expectancies for taking medicine, and motivation for and importance of taking medicine. In phase 3, qualitative interviews related to user experiences were conducted with participants in the Reminder+COM-B Message intervention group. Results: Following phase 1, 34 participants (mean age 16.59 years, 41\% female, 38\% African American/Black, 35\% hypertension diagnosis) completed the phase 2 pilot randomized controlled trial (n=18 in the Reminder+COM-B Message intervention group, n=16 in the Reminder-only Message active control group). All participants in the Reminder+COM-B Message intervention group completed a phase 3 qualitative interview. Overall, study procedures were feasible and the Reminder+COM-B Message intervention was acceptable to the participants (eg, 15/18 participants reported reading the majority of messages sent to them, 0/18 reported that the messages reduced their desire to take medicine). Prerandomization, there were no significant group differences in the rate of change in daily adherence over time. However, postrandomization, there was a significant group by time interaction (B=.01, P=.04) in which daily adherence decreased significantly over time in the Reminder-only Message active control group but remained stable in the Reminder+COM-B Message intervention group. There were no significant differences between groups in pre-post changes in survey responses. Qualitative interviews revealed participants' perceptions of how the Reminder+COM-B Message intervention changed adherence behavior and highlighted several areas for improving the intervention (eg, adapt messaging timing, intensity, and content to match daily adherence, send praise when medicine is taken). Conclusions: The Reminder+COM-B Message intervention was feasible and acceptable to adolescents/young adults and demonstrated potential to promote participants' daily medication adherence beyond simple reminders. Further research is needed to determine the Reminder+COM-B Message intervention's mechanisms of adherence behavior change and to incorporate qualitative participant feedback into a modified version of this intervention to enhance its acceptability. Trial Registration: ClinicalTrials.gov NCT03651596; https://clinicaltrials.gov/ct2/show/NCT03651596 ",
doi="10.2196/19861",
url="http://www.jmir.org/2020/8/e19861/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32795983"
}


@Article{info:doi/10.2196/17768,
author="Anderson, Emma
and Parslow, Roxanne
and Hollingworth, William
and Mills, Nicola
and Beasant, Lucy
and Gaunt, Daisy
and Metcalfe, Chris
and Kessler, David
and Macleod, John
and Pywell, Susan
and Pitts, Kieren
and Price, Simon
and Stallard, Paul
and Knoop, Hans
and Van de Putte, Elise
and Nijhof, Sanne
and Bleijenberg, Gijs
and Crawley, Esther",
title="Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial",
journal="J Med Internet Res",
year="2020",
month="Aug",
day="12",
volume="22",
number="8",
pages="e17768",
keywords="pediatrics",
keywords="chronic fatigue syndrome",
keywords="myalgic encephalomyelitis",
keywords="cognitive behavioral therapy",
keywords="eHealth",
keywords="online systems",
keywords="e-therapy",
keywords="e-counseling",
keywords="pilot projects",
keywords="qualitative research",
abstract="Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment. Objective: This study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial). Methods: This study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments. Results: A total of 89 out of 150 (59.3\% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2\%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported. Conclusions: Recruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment. Trial Registration: ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 International Registered Report Identifier (IRRID): RR2-10.1186/s13063-018-2500-3 ",
doi="10.2196/17768",
url="https://www.jmir.org/2020/8/e17768",
url="http://www.ncbi.nlm.nih.gov/pubmed/32784188"
}


@Article{info:doi/10.2196/16924,
author="Brigden, Amberly
and Anderson, Emma
and Linney, Catherine
and Morris, Richard
and Parslow, Roxanne
and Serafimova, Teona
and Smith, Lucie
and Briggs, Emily
and Loades, Maria
and Crawley, Esther",
title="Digital Behavior Change Interventions for Younger Children With Chronic Health Conditions: Systematic Review",
journal="J Med Internet Res",
year="2020",
month="Jul",
day="31",
volume="22",
number="7",
pages="e16924",
keywords="mobile phone",
keywords="mHealth",
keywords="mobile health",
keywords="eHealth",
keywords="electronic health",
keywords="digital health",
keywords="behavior",
keywords="pediatrics",
keywords="chronic illness",
keywords="systematic review",
abstract="Background: The prevalence of chronic health conditions in childhood is increasing, and behavioral interventions can support the management of these conditions. Compared with face-to-face treatment, the use of digital interventions may be more cost-effective, appealing, and accessible, but there has been inadequate attention to their use with younger populations (children aged 5-12 years). Objective: This systematic review aims to (1) identify effective digital interventions, (2) report the characteristics of promising interventions, and (3) describe the user's experience of the digital intervention. Methods: A total of 4 databases were searched (Excerpta Medica Database [EMBASE], PsycINFO, Medical Literature Analysis and Retrieval System Online [MEDLINE], and the Cochrane Library) between January 2014 and January 2019. The inclusion criteria for studies were as follows: (1) children aged between 5 and 12 years, (2) interventions for behavior change, (3) randomized controlled trials, (4) digital interventions, and (5) chronic health conditions. Two researchers independently double reviewed papers to assess eligibility, extract data, and assess quality. Results: Searches run in the databases identified 2643 papers. We identified 17 eligible interventions. The most promising interventions (having a beneficial effect and low risk of bias) were 3 targeting overweight or obesity, using exergaming or social media, and 2 for anxiety, using web-based cognitive behavioral therapy (CBT). Characteristics of promising interventions included gaming features, therapist support, and parental involvement. Most were purely behavioral interventions (rather than CBT or third wave), typically using the behavior change techniques (BCTs) feedback and monitoring, shaping knowledge, repetition and substitution, and reward. Three papers included qualitative data on the user's experience. We developed the following themes: parental involvement, connection with a health professional is important for engagement, technological affordances and barriers, and child-centered design. Conclusions: Of the 17 eligible interventions, digital interventions for anxiety and overweight or obesity had the greatest promise. Using qualitative methods during digital intervention development and evaluation may lead to more meaningful, usable, feasible, and engaging interventions, especially for this underresearched younger population. The following characteristics could be considered when developing digital interventions for younger children: involvement of parents, gaming features, additional therapist support, behavioral (rather than cognitive) approaches, and particular BCTs (feedback and monitoring, shaping knowledge, repetition and substitution, and reward). This review suggests a model for improving the conceptualization and reporting of behavioral interventions involving children and parents. ",
doi="10.2196/16924",
url="http://www.jmir.org/2020/7/e16924/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32735227"
}


@Article{info:doi/10.2196/16234,
author="Stinson, N. Jennifer
and Lalloo, Chitra
and Hundert, S. Amos
and Campillo, Sarah
and Cellucci, Tania
and Dancey, Paul
and Duffy, Ciaran
and Ellsworth, Janet
and Feldman, M. Brian
and Huber, M. Adam
and Johnson, Nicole
and Jong, Geert't
and Oen, Kiem
and Rosenberg, M. Alan
and Shiff, J. Natalie
and Spiegel, Lynn
and Tse, L. Shirley M.
and Tucker, Lori
and Victor, Charles Joseph",
title="Teens Taking Charge: A Randomized Controlled Trial of a Web-Based Self-Management Program With Telephone Support for Adolescents With Juvenile Idiopathic Arthritis",
journal="J Med Internet Res",
year="2020",
month="Jul",
day="29",
volume="22",
number="7",
pages="e16234",
keywords="eHealth",
keywords="randomized controlled trial",
keywords="adolescents",
keywords="juvenile idiopathic arthritis",
keywords="self-management",
keywords="self-efficacy",
keywords="technology",
keywords="patient education",
keywords="internet",
keywords="pediatric pain",
abstract="Background: Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes. Objective: This study aimed to evaluate the effectiveness of the Teens Taking Charge Web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA compared with a Web-based education control condition. Methods: Adolescents with JIA aged 12 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the Teens Taking Charge self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of preselected public JIA educational websites and received monthly calls from a coach who asked about their own best efforts at managing JIA. Caregivers in the intervention group completed website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy. Results: In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (P=.02) and pain interference (P=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (P=.02) and problems with daily activities (P=.01). There was also a significant difference in the intervention group over time (P=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes. Conclusions: The results of this randomized trial suggest that the Teens Taking Charge Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The Teens Taking Charge program is now publicly available at no cost. Trial Registration: ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896 ",
doi="10.2196/16234",
url="https://www.jmir.org/2020/7/e16234",
url="http://www.ncbi.nlm.nih.gov/pubmed/32723728"
}


@Article{info:doi/10.2196/19485,
author="Champion, Elizabeth Katrina
and Gardner, Anne Lauren
and McGowan, Cyanna
and Chapman, Cath
and Thornton, Louise
and Parmenter, Belinda
and McBride, Nyanda
and Lubans, R. David
and McCann, Karrah
and Spring, Bonnie
and Teesson, Maree
and 
and Newton, Clare Nicola",
title="A Web-Based Intervention to Prevent Multiple Chronic Disease Risk Factors Among Adolescents: Co-Design and User Testing of the Health4Life School-Based Program",
journal="JMIR Form Res",
year="2020",
month="Jul",
day="28",
volume="4",
number="7",
pages="e19485",
keywords="primary prevention",
keywords="schools",
keywords="eHealth",
keywords="chronic disease",
keywords="mobile phone",
keywords="health promotion",
abstract="Background: Chronic diseases are the leading cause of death worldwide. Addressing key lifestyle risk factors during adolescence is critical for improving physical and mental health outcomes and reducing chronic disease risk. Schools are ideal intervention settings, and electronic health (eHealth) interventions afford several advantages, including increased student engagement, scalability, and sustainability. Although lifestyle risk behaviors tend to co-occur, few school-based eHealth interventions have targeted multiple behaviors concurrently. Objective: This study aims to summarize the co-design and user testing of the Health4Life school-based program, a web-based cartoon intervention developed to concurrently prevent 6 key lifestyle risk factors for chronic disease among secondary school students: alcohol use, smoking, poor diet, physical inactivity, sedentary recreational screen time, and poor sleep (the Big 6). Methods: The development of the Health4Life program was conducted over 18 months in collaboration with students, teachers, and researchers with expertise relevant to the Big 6. The iterative process involved (1) scoping of evidence and systematic literature review; (2) consultation with adolescents (N=815) via a cross-sectional web-based survey to identify knowledge gaps, attitudes, barriers, and facilitators in relation to the Big 6; (3) content and web development; and (4) user testing of the web-based program with students (n=41) and teachers (n=8) to evaluate its acceptability, relevance, and appeal to the target audience. Results: The co-design process resulted in a six-module, evidence-informed program that uses interactive cartoon storylines and web-based delivery to engage students. Student and teacher feedback collected during user testing was positive in terms of acceptability and relevance. Commonly identified areas for improvement concerned the length of modules, age appropriateness of language and alcohol storyline, the need for character backstories and links to syllabus information, and feasibility of implementation. Modifications were made to address these issues. Conclusions: The Health4Life school-based program is the first universal, web-based program to concurrently address 6 important chronic disease risk factors among secondary school students. By adopting a multiple health behavior change approach, it has the potential to efficiently modify the Big 6 risk factors within one program and to equip young people with the skills and knowledge needed to achieve and maintain good physical and mental health throughout adolescence and into adulthood. ",
doi="10.2196/19485",
url="http://formative.jmir.org/2020/7/e19485/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32720898"
}


@Article{info:doi/10.2196/15295,
author="Nichols, Michelle
and Miller, Sarah
and Treiber, Frank
and Ruggiero, Kenneth
and Dawley, Erin
and Teufel II, Ronald",
title="Patient and Parent Perspectives on Improving Pediatric Asthma Self-Management Through a Mobile Health Intervention: Pilot Study",
journal="JMIR Form Res",
year="2020",
month="Jul",
day="3",
volume="4",
number="7",
pages="e15295",
keywords="asthma",
keywords="mobile health",
keywords="ecological momentary assessment",
keywords="adolescents",
keywords="medication adherence",
keywords="self-management",
keywords="mobile phone",
abstract="Background: Asthma is a common chronic pediatric disease that can negatively impact children and families. Self-management strategies are challenging to adopt but critical for achieving positive outcomes. Mobile health technology may facilitate self-management of pediatric asthma, especially as adolescents mature and assume responsibility for their disease. Objective: This study aimed to explore the perceptions of youths with high-risk asthma and their caregivers on the use of a smartphone app, Smartphone Asthma Management System, in the prevention and treatment of asthma symptoms, possible use of the app to improve self-management of asthma outside traditional clinical settings, and the impact of asthma on everyday life to identify potential needs for future intervention development. Methods: Key informant interviews were completed with parent-child dyads post participation in an asthma management feasibility intervention study to explore the perceptions of users on a smartphone app designed to monitor symptoms and medication use and offer synchronous and asynchronous provider encounters. A thematic qualitative analysis was conducted inductively through emergent findings and deductively based on the self-determination theory (SDT), identifying 4 major themes. Results: A total of 19 parent-child dyads completed the postintervention interviews. The major themes identified included autonomy, competence, relatedness, and the impact of asthma on life. The participants also shared their perceptions of the benefits and challenges associated with using the app and in the self-management of asthma. Both children and parents conveyed a preference for using technology to facilitate medication and disease management, and children demonstrated a strong willingness and ability to actively engage in their care. Conclusions: Our study included support for the app and demonstrated the feasibility of enhancing the self-management of asthma by youth in the community. Participant feedback led to intervention refinement and app improvements, and the use of the SDT allowed insight into motivational drivers of behavioral change. The use of mobile apps among high-risk children with asthma and their parents shows promise in improving self-management, medication adherence, and disease awareness and in reducing overall disease morbidity. ",
doi="10.2196/15295",
url="https://formative.jmir.org/2020/7/e15295",
url="http://www.ncbi.nlm.nih.gov/pubmed/32442127"
}


@Article{info:doi/10.2196/20712,
author="Berman, A. Claire
and Kacanek, Deborah
and Nichamin, Mindy
and Wilson, Dominique
and Davtyan, Mariam
and Salomon, Liz
and Patel, Kunjal
and Reznick, Megan
and Tassiopoulos, Katherine
and Lee, Sonia
and Bauermeister, Jose
and Paul, Mary
and Aldape, Theresa
and Seage III, R. George",
title="Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV",
journal="JMIR Pediatr Parent",
year="2020",
month="Jun",
day="23",
volume="3",
number="1",
pages="e20712",
keywords="pediatric HIV",
keywords="perinatal HIV",
keywords="youth",
keywords="young adults",
keywords="social media",
keywords="study retention",
keywords="COVID-19",
abstract="Background: As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU. Objective: The objectives of this qualitative study were to describe participants' perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV. Methods: We conducted 6 focus group discussions with 31 young adults living with PHIV and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol, a US-based longitudinal cohort study of youth affected by HIV. Results: Participants' willingness to use social media platforms, telephone calls, SMS text messages, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms. Conclusions: Our findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research. ",
doi="10.2196/20712",
url="http://pediatrics.jmir.org/2020/1/e20712/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32540839"
}


@Article{info:doi/10.2196/17184,
author="Oser, K. Tamara
and Oser, M. Sean
and Parascando, A. Jessica
and Grisolano, Ann Lee
and Krishna, Bangalore Kanthi
and Hale, E. Daniel
and Litchman, Michelle
and Majidi, Shideh
and Haidet, Paul",
title="Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study",
journal="J Med Internet Res",
year="2020",
month="Jun",
day="3",
volume="22",
number="6",
pages="e17184",
keywords="type 1 diabetes",
keywords="autism spectrum disorder",
keywords="child",
keywords="blogs",
keywords="social media",
keywords="qualitative research",
abstract="Background: Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. Objective: This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. Methods: Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child's most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. Results: For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6\% (70 mmol/mol) and 8.7\% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. Conclusions: Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community. ",
doi="10.2196/17184",
url="https://www.jmir.org/2020/6/e17184",
url="http://www.ncbi.nlm.nih.gov/pubmed/32217508"
}


@Article{info:doi/10.2196/14202,
author="Sezgin, Emre
and Noritz, Garey
and Elek, Alexander
and Conkol, Kimberly
and Rust, Steve
and Bailey, Matthew
and Strouse, Robert
and Chandawarkar, Aarti
and von Sadovszky, Victoria
and Lin, Simon
and Huang, Yungui",
title="Capturing At-Home Health and Care Information for Children With Medical Complexity Using Voice Interactive Technologies: Multi-Stakeholder Viewpoint",
journal="J Med Internet Res",
year="2020",
month="Feb",
day="13",
volume="22",
number="2",
pages="e14202",
keywords="care coordination",
keywords="self-management",
keywords="children with medical complexity",
keywords="voice technology",
keywords="voice assistant",
keywords="digital health",
keywords="conversational agents",
doi="10.2196/14202",
url="https://www.jmir.org/2020/2/e14202",
url="http://www.ncbi.nlm.nih.gov/pubmed/32053114"
}


@Article{info:doi/10.2196/14503,
author="Lee, Rachael Rebecca
and Shoop-Worrall, Stephanie
and Rashid, Amir
and Thomson, Wendy
and Cordingley, Lis",
title="``Asking Too Much?'': Randomized N-of-1 Trial Exploring Patient Preferences and Measurement Reactivity to Frequent Use of Remote Multidimensional Pain Assessments in Children and Young People With Juvenile Idiopathic Arthritis",
journal="J Med Internet Res",
year="2020",
month="Jan",
day="30",
volume="22",
number="1",
pages="e14503",
keywords="mHealth",
keywords="pain",
keywords="pain assessment",
keywords="juvenile idiopathic arthritis",
keywords="patient reported outcomes",
keywords="pediatrics",
abstract="Background: Remote monitoring of pain using multidimensional mobile health (mHealth) assessment tools is increasingly being adopted in research and care. This assessment method is valuable because it is challenging to capture pain histories, particularly in children and young people in diseases where pain patterns can be complex, such as juvenile idiopathic arthritis (JIA). With the growth of mHealth measures and more frequent assessment, it is important to explore patient preferences for the timing and frequency of administration of such tools and consider whether certain administrative patterns can directly impact on children's pain experiences. Objective: This study aimed to explore the feasibility and influence (in terms of objective and subjective measurement reactivity) of several time sampling strategies in remote multidimensional pain reporting. Methods: An N-of-1 trial was conducted in a subset of children and young people with JIA and their parents recruited to a UK cohort study. Children were allocated to 1 of 4 groups. Each group followed a different schedule of completion of MPT for 8 consecutive weeks. Each schedule included 2 blocks, each comprising 4 different randomized time sampling strategies, with each strategy occurring once within each 4-week block. Children completed MPT according to time sampling strategies: once-a-day, twice-a-day, once-a-week, and as-and-when pain was experienced. Adherence to each strategy was calculated. Participants completed the Patient-Reported Outcomes Measurement Information System Pain Interference Scale at the end of each week to explore objective reactivity. Differences in pain interference scores between time sampling strategies were assessed graphically and using Friedman tests. Children and young people and their parents took part in a semistructured interview about their preferences for different time sampling strategies and to explore subjective reactivity. Results: A total of 14 children and young people (aged 7-16 years) and their parents participated. Adherence to pain reporting was higher in less intense time sampling strategies (once-a-week=63\% [15/24]) compared with more intense time sampling strategies (twice-a-day=37.8\% [127/336]). There were no statistically significant differences in pain interference scores between sampling strategies. Qualitative findings from interviews suggested that children preferred once-a-day (6/14, 43\%) and as-and-when pain reporting (6/14, 43\%). Creating routine was one of the most important factors for successful reporting, while still ensuring that comprehensive information about recent pain was captured. Conclusions: Once-a-day pain reporting provides rich contextual information. Although patients were less adherent to this preferred sampling strategy, once-a-day reporting still provides more frequent assessment opportunities compared with other less intense or overburdensome schedules. Important issues for the design of studies and care incorporating momentary assessment techniques were identified. We demonstrate that patient reporting preferences are key to accommodate and are important where data capture quality is key. Our findings support frequent administration of such tools, using daily reporting methods where possible. ",
doi="10.2196/14503",
url="http://www.jmir.org/2020/1/e14503/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32012051"
}


@Article{info:doi/10.2196/15093,
author="Saulsberry, C. Anjelica
and Hodges, R. Jason
and Cole, Audrey
and Porter, S. Jerlym
and Hankins, Jane",
title="Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study",
journal="JMIR Pediatr Parent",
year="2020",
month="Jan",
day="7",
volume="3",
number="1",
pages="e15093",
keywords="sickle cell anemia",
keywords="eHealth",
keywords="transition to adult care",
abstract="Background: Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. Objective: The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. Methods: This was a single-center, Institution Review Board--approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. Results: Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0\%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (r=0.47) was found between the number of STEP modules completed and disease knowledge scores (P=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ?3 STEP modules compared with those who completed <3 STEP modules (U=149.00; P=.007). Conclusions: Improvement in disease knowledge in adolescence is critical to ensure the youth's ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care. ",
doi="10.2196/15093",
url="https://pediatrics.jmir.org/2020/1/e15093",
url="http://www.ncbi.nlm.nih.gov/pubmed/31909718"
}


@Article{info:doi/10.2196/13579,
author="Virella P{\'e}rez, Ilene Yisselle
and Medlow, Sharon
and Ho, Jane
and Steinbeck, Katharine",
title="Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review",
journal="J Med Internet Res",
year="2019",
month="Nov",
day="20",
volume="21",
number="11",
pages="e13579",
keywords="adolescent",
keywords="mobile app",
keywords="Web-based app",
keywords="chronic illness",
keywords="self-management",
keywords="transition to adult care",
abstract="Background: More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective: This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods: We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results: A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant's satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions: There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration: PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=104611 ",
doi="10.2196/13579",
url="http://www.jmir.org/2019/11/e13579/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31746773"
}


@Article{info:doi/10.2196/12427,
author="McGar, Brook Ashley
and Kindler, Christine
and Marsac, Meghan",
title="Electronic Health Interventions for Preventing and Treating Negative Psychological Sequelae Resulting From Pediatric Medical Conditions: Systematic Review",
journal="JMIR Pediatr Parent",
year="2019",
month="Nov",
day="11",
volume="2",
number="2",
pages="e12427",
keywords="telemedicine",
keywords="children",
keywords="caregivers",
keywords="injury",
keywords="chronic disease",
keywords="wounds and injuries",
keywords="depression",
keywords="anxiety",
abstract="Background: Pediatric medical conditions have the potential to result in challenging psychological symptoms (eg, anxiety, depression, and posttraumatic stress symptoms [PTSS]) and impaired health-related quality of life in youth. Thus, effective and accessible interventions are needed to prevent and treat psychological sequelae associated with pediatric medical conditions. Electronic health (eHealth) interventions may help to meet this need, with the capacity to reach more children and families than in-person interventions. Many of these interventions are in their infancy, and we do not yet know what key components contribute to successful eHealth interventions. Objective: The primary objective of this study was to conduct a systematic review to summarize current evidence on the efficacy of eHealth interventions designed to prevent or treat psychological sequelae in youth with medical conditions. Methods: MEDLINE (PubMed) and PsycINFO databases were searched for studies published between January 1, 1998, and March 1, 2019, using predefined search terms. A total of 2 authors independently reviewed titles and abstracts of search results to determine which studies were eligible for full-text review. Reference lists of studies meeting eligibility criteria were reviewed. If the title of a reference suggested that it might be relevant for this review, the full manuscript was reviewed for inclusion. Inclusion criteria required that eligible studies (1) had conducted empirical research on the efficacy of a Web-based intervention for youth with a medical condition, (2) had included a randomized trial as part of the study method, (3) had assessed the outcomes of psychological sequelae (ie, PTSS, anxiety, depression, internalizing symptoms, or quality of life) in youth (aged 0-18 years), their caregivers, or both, (4) had included assessments at 2 or more time points, and (5) were available in English language. Results: A total of 1512 studies were reviewed for inclusion based on their title and abstracts; 39 articles qualified for full-text review. Moreover, 22 studies met inclusion criteria for the systematic review. Of the 22 included studies, 13 reported results indicating that eHealth interventions significantly improved at least one component of psychological sequelae in participants. Common characteristics among interventions that showed an effect included content on problem solving, education, communication, and behavior management. Studies most commonly reported on child and caregiver depression, followed by child PTSS and caregiver anxiety. Conclusions: Previous research is mixed but suggests that eHealth interventions may be helpful in alleviating or preventing problematic psychological sequelae in youth with medical conditions and their caregivers. Additional research is needed to advance understanding of the most powerful intervention components and to determine when and how to best disseminate eHealth interventions, with the goal of extending the current reach of psychological interventions. ",
doi="10.2196/12427",
url="http://pediatrics.jmir.org/2019/2/e12427/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31710299"
}


@Article{info:doi/10.2196/13452,
author="Creary, Susan
and Chisolm, Deena
and Stanek, Joseph
and Hankins, Jane
and O'Brien, H. Sarah",
title="A Multidimensional Electronic Hydroxyurea Adherence Intervention for Children With Sickle Cell Disease: Single-Arm Before-After Study",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Aug",
day="08",
volume="7",
number="8",
pages="e13452",
keywords="hydroxyurea",
keywords="children",
keywords="sickle cell disease",
keywords="mobile health",
keywords="mhealth",
keywords="adherence",
keywords="textmessaging",
abstract="Background: Hydroxyurea is a disease-modifying medication for patients with sickle cell disease (SCD). Despite demonstrated efficacy, hydroxyurea nonadherence in clinical practice is common and results in worse health outcomes for nonadherent patients. Mobile Directly Observed Therapy (Mobile DOT) is a pilot-tested, electronic, multidimensional hydroxyurea adherence intervention for children with SCD. Mobile DOT includes sending daily text message reminders to patients to take hydroxyurea, patients recording and sending daily videos that capture their hydroxyurea administrations for the research team to review and track adherence, providing personalized feedback to patients about their adherence, and providing small monetary incentives to patients if they achieve high hydroxyurea adherence. Objective: This study aimed to determine if Mobile DOT increases hydroxyurea adherence in children with SCD and to explore its impact on hematologic and clinical outcomes. Methods: This was a single-arm, 6-month intervention study of patients with SCD on hydroxyurea who were aged ?19 years and reported having access to an electronic device. Participants' hydroxyurea adherence when they received Mobile DOT was compared with their adherence 6 months before and after receiving Mobile DOT. Participants' medication possession ratio (MPR) was calculated from their pharmacy dispensing records and was used to measure adherence. Laboratory and clinical outcomes were abstracted from participants' electronic medical records. Infrequently hospitalized patients who received at least 160 days of the intervention were considered to be engaged participants. Results: Of 91 patients who were approached, 55 enrolled and 34 engaged with Mobile DOT. The median age of the engaged participants was 10 years (range 2-18.8 years), and 21 (62\%, 21/34) participants were male, 28 (82\%, 21/34) had hemoglobin SS SCD, and 19 (56\%, 19/34) were prescribed hydroxyurea for at least a year before enrollment. With Mobile DOT, engaged participants' median MPR increased from 61.7\% to 84.4\% (P<.001) and significantly more (67\% vs 30\%; P=.002) achieved ?80\% hydroxyurea adherence compared with baseline values. Engaged participants' mean fetal hemoglobin (HgbF) levels and mean corpuscular volumes (MCV) improved significantly after 6 months of Mobile DOT (P=.04 and P=.001, respectively), but their adherence, HgbF levels, and MCV returned to baseline values during the 6 months after the intervention. Hospitalizations and the clinical outcomes that were measured occurred infrequently during the study. Nonengagement was associated with being female and having a recent SCD complication. In addition, having insufficient electronic data, being unable to quickly complete Mobile DOT each day, and not perceiving that Mobile DOT was beneficial may have further decreased engagement. Conclusions: Mobile DOT shows promise as an effective intervention for some children with SCD. Modifications that may improve recruitment, reduce attrition, and increase engagement were identified and could increase the impact that Mobile DOT has on children with SCD. Trial Registration: ClinicalTrials.gov NCT02578017; https://clinicaltrials.gov/ct2/show/NCT02578017 ",
doi="10.2196/13452",
url="https://mhealth.jmir.org/2019/8/e13452/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31397291"
}


@Article{info:doi/10.2196/12042,
author="Low, Kee Jac
and Manias, Elizabeth",
title="Use of Technology-Based Tools to Support Adolescents and Young Adults With Chronic Disease: Systematic Review and Meta-Analysis",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Jul",
day="18",
volume="7",
number="7",
pages="e12042",
keywords="young adult",
keywords="adolescent",
keywords="self-management",
keywords="transition to adult care",
keywords="disease management",
keywords="systematic review",
abstract="Background: With the large amount of material that is readily available on the internet, there are endless opportunities for electronic health--literate patients to obtain and learn new information. Although novel, a Web- or mobile-based program can be a powerful way to engage adolescents and young adults (AYAs). The ongoing engagement of AYAs with chronic disease is vital not only to empower them but also to ensure a smooth transition from pediatric to adult health care. Objective: This study aimed to evaluate the current evidence on Web- or mobile-based interventions designed for AYAs. Methods: This review was registered with PROSPERO: CRD42018096487. A systematic search of MEDLINE Complete, EMBASE, and CINAHL Complete was conducted on April 10, 2019, for studies that examined the perspectives of transition-age patients about technology-based interventions, the process involved in intervention development, or the evaluation of intervention efficacy. For each study, the comprehensiveness of reporting was appraised. The Downs and Black checklist was used for intervention efficacy trials, the Standards for Reporting Qualitative Research checklist was used for qualitative work, and a 16-item tool developed by Tong et al was used for questionnaire research. Results: The search uncovered 29 relevant studies, which included qualitative studies (n=14), intervention efficacy studies (n=7), questionnaire studies (n=4), mixed qualitative and questionnaire studies (n=2), and a mixed qualitative and pilot randomized controlled trial study (n=1). The reporting comprehensiveness score of questionnaires was rated considerably lower (n=6, 13\%-57\% [2/16-8/14]) than the scores of intervention efficacy trials (n=8, 48\%-85\% [13/27-23/27]) and qualitative research (n=17, 40\%-93\% [8.5/21-19.5/21]). AYAs were receptive to obtaining information via a website or mobile app. An intervention was more likely to be perceived as useful by AYAs when there was a concerted effort to involve AYAs and subject matter experts in the process of intervention design, as opposed to relying solely on the AYAs or the experts alone. The preferred medium of intervention delivery varied greatly for AYAs, ranging from static text to audiovisual materials. However, AYAs considered being concise was the most important aspect. Across different conditions, AYAs were interested in receiving information on diverse topics, such as anxiety and stress management, dealing with insurance, and having social relationships. Patients also requested for disease-specific information, such as weather forecasts and pollen levels for patients with asthma and information related to the pretransplant period for organ transplant recipients. Meta-analyses showed no significant group differences across time on quality of life, self-efficacy, and self-management. Conclusions: Owing to the lack of intervention efficacy trials, no conclusion can be drawn if an intervention delivered via a mobile app is better than that delivered via a website. However, through this systematic review, it is confirmed that AYAs were receptive to receiving medical information electronically. ",
doi="10.2196/12042",
url="http://mhealth.jmir.org/2019/7/e12042/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31322129"
}


@Article{info:doi/10.2196/12258,
author="Carlsen, Katrine
and Hald, Mette
and Dubinsky, C. Marla
and Keefer, Laurie
and Wewer, Vibeke",
title="A Personalized eHealth Transition Concept for Adolescents With Inflammatory Bowel Disease: Design of Intervention",
journal="JMIR Pediatr Parent",
year="2019",
month="Apr",
day="24",
volume="2",
number="1",
pages="e12258",
keywords="inflammatory bowel disease",
keywords="adolescents",
keywords="transition",
keywords="transfer",
keywords="adult care",
abstract="Background: Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD). Objective: Our aim was to develop a personalized transition-transfer concept including relevant tools in an established eHealth (electronic health) program. Methods: Required transition skills and validated patient-reported outcome measures (PROMs) were identified via bibliographic search and clinical experience and were implemented into an existing eHealth program. Results: The following skills were identified: disease knowledge, social life, disease management, and making well-informed, health-related decisions. The PROMs included the following: self-efficacy (the IBD Self-Efficacy Scale---Adolescents), resilience (the 10-item Connor-Davidson Resilience Scale), response to stress (the Child Self-Report Responses to Stress---IBD), and self-management and health care transition skills (the Self-Management and Transition to Adulthood with Treatment questionnaire). Starting at age 14, the patient will be offered a 1-hour annual transition consultation with an IBD-specialized nurse. The consultation will be based on the results of the PROMs and will focus on the patient's difficulties. Patients will complete the PROMs on the eHealth program at home, allowing nurses and patients to prepare for the meeting. Symptom scores and medication will be filled out on the eHealth program to support disease self-management. The consultation will be a topic-centered dialogue with practical exercises. During routine outpatient visits with the provider, parents will be left out of half of the consultation when the patient is 16 years old; at 17 years old, the parents will not be present. At the transfer consultation, the pediatric provider, the adult gastroenterologist, the pediatric nurse, the patient, and the parents will be present to ensure a proper transfer. Conclusions: We have conducted a personalized eHealth transition concept consisting of basic elements that measure, train, and monitor the patients' transition readiness. The concept can be implemented and adjusted to local conditions. ",
doi="10.2196/12258",
url="http://pediatrics.jmir.org/2019/1/e12258/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518331"
}


@Article{info:doi/10.2196/11761,
author="Dijkstra, Alie
and Heida, Anke
and van Rheenen, Ferry Patrick",
title="Exploring the Challenges of Implementing a Web-Based Telemonitoring Strategy for Teenagers With Inflammatory Bowel Disease: Empirical Case Study",
journal="J Med Internet Res",
year="2019",
month="Mar",
day="29",
volume="21",
number="3",
pages="e11761",
keywords="eHealth",
keywords="inflammatory bowel disease",
keywords="health care improvement",
keywords="implementation science",
keywords="quality of care",
abstract="Background: We designed a telemonitoring strategy for teenagers with inflammatory bowel disease to prevent an anticipated disease flare and avert unplanned office visits and day care procedures. The strategy was evaluated in a randomized controlled trial that involved 11 Dutch pediatric gastroenterology centers, each using repeated symptom scores and stool calprotectin measurements. In the telemonitoring arm of the trial, teenagers (n=84) as well as their health providers were alerted to out-of-range results, and suggestions for change in therapy were offered. We demonstrated that the technology was a safe and cost saving alternative to health checks by the specialist at fixed intervals. Objective: The aim of this study was to evaluate whether we could move our telemonitoring strategy from a demonstration project to one that is sustained within existing sites. Methods: In this empirical case study, we used the nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework to explore the challenges to implementing our strategy. The framework distinguishes 7 domains: (1) the illness, (2) the technology, (3) the value proposition, (4) the adopter system, (5) the organization, (6) the societal system, and (7) the time dimension. We summarized the challenges across all 7 domains and classified them as simple (+++), complicated (++), or complex (+). Technologies in which multiple domains are complicated have proven difficult to implement, whereas those with multiple complex domains may not even become mainstreamed. Results: The technology that we used and the linked program (IBD-live) allowed us to select and target the teenagers who were most likely to benefit from a face-to-face encounter with their specialist (+++). The value proposition of the technology was clear, with a distinct benefit for patients and an affordable service model, but health providers had plausible personal reasons to resist (double data entry, ++). The organization was not yet ready for the innovation, as it requires a shift to new ways of working (+). We had no concerns about reimbursement, as Dutch health insurers agreed that screen-to-screen consultations will be reimbursed at a rate equivalent to face-to-face consultations (+++). Finally, the technology was considered easy to adapt and evolve over time to meet the needs of its users (+++). Conclusions: The challenges to be addressed are merely complicated (++) rather than complex (+), which means that our program may be difficult but not impossible to sustain within existing sites. After integrating the technology and its use with local workflows first, we believe that our telemonitoring strategy will be ready for sustained adoption. In contrast with what we did ourselves, we recommend others to use the NASSS framework prospectively and in real time to predict and explore the challenges to implementing new technologies. ",
doi="10.2196/11761",
url="http://www.jmir.org/2019/3/e11761/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30924785"
}


@Article{info:doi/10.2196/12411,
author="Kosse, C. Richelle
and Bouvy, L. Marcel
and Belitser, V. Svetlana
and de Vries, W. Tjalling
and van der Wal, S. Piet
and Koster, S. Ellen",
title="Effective Engagement of Adolescent Asthma Patients With Mobile Health--Supporting Medication Adherence",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Mar",
day="27",
volume="7",
number="3",
pages="e12411",
keywords="adolescent",
keywords="asthma",
keywords="medication adherence",
keywords="pharmacists",
keywords="telemedicine",
abstract="Background: Mobile health (mHealth) apps have the potential to support patients' medication use and are therefore increasingly used. Apps with broad functionality are suggested to be more effective; however, not much is known about the actual use of different functionalities and the effective engagement. Objective: The aim of this study was to explore the use and the effective engagement of adolescents (aged 12 to 18 years) with the Adolescent Adherence Patient Tool (ADAPT). Methods: The ADAPT intervention consisted of an app for patients, which was connected to a management system for their pharmacist. The aim of the ADAPT intervention was to improve medication adherence and, therefore, the app contained multiple functionalities: questionnaires to monitor symptoms and adherence, medication reminders, short movies, pharmacist chat, and peer chat. For this study, data of the ADAPT study and a cluster randomized controlled trial were used. Adolescents with asthma had 6 months' access to the ADAPT intervention, and all app usage was securely registered in a log file. Results: In total, 86 adolescents (mean age 15.0, SD 2.0 years) used the ADAPT app 17 times (range 1-113) per person. Females used the app more often than males (P=.01) and for a longer period of time (P=.03). On average, 3 different functionalities were used, and 13\% of the adolescents used all functionalities of the app. The questionnaires to monitor symptoms and adherence were used by most adolescents. The total app use did not affect adherence; however, activity in the pharmacist chat positively affected medication adherence (P=.03), in particular, if patients sent messages to their pharmacist (P=.01). Conclusions: mHealth apps for adolescents with asthma should contain different functionalities to serve the diverging needs and preferences of individual patients. Suggested key functionalities to promote use and effectiveness in adolescents with asthma are questionnaires to monitor symptoms and a health care provider chat. ",
doi="10.2196/12411",
url="http://mhealth.jmir.org/2019/3/e12411/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30916664"
}


@Article{info:doi/10.2196/10401,
author="Grande, W. Stuart
and Longacre, R. Meghan
and Palmblad, Karin
and Montan, V. Meera
and Berquist, P. Rikard
and Hager, Andreas
and Kotzbauer, Greg",
title="Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Feb",
day="22",
volume="7",
number="2",
pages="e10401",
keywords="juvenile arthritis",
keywords="interviews",
keywords="health communication",
keywords="patient participation",
abstract="Background: Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies. Objective: This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams. Methods: Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis. Results: We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation. Conclusions: A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes. ",
doi="10.2196/10401",
url="http://mhealth.jmir.org/2019/2/e10401/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30794202"
}


@Article{info:doi/10.2196/11080,
author="Longacre, Meghan
and Grande, Stuart
and Hager, Andreas
and Montan, Meera
and Bergquist, Palmer Rikard
and Martensson, Maria
and Kotzbauer, Greg",
title="Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study",
journal="JMIR Pediatr Parent",
year="2018",
month="Dec",
day="10",
volume="1",
number="2",
pages="e11080",
keywords="cystic fibrosis",
keywords="mHealth",
keywords="mobile phone",
keywords="pediatrics",
keywords="qualitative case study",
keywords="technology",
abstract="Background: Mobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Barriers to implementation include the lack of support and infrastructure to use mHealth in the clinical microsystem. Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting. Objective: This study explored the development, adoption, and integration of a new, co-produced mHealth platform (Genia) for the management of pediatric CF in Sweden. Methods: A retrospective, qualitative case study approach was used. The case was defined as the process of introducing and using Genia at the Pediatric Cystic Fibrosis Center at Sk{\aa}ne University Hospital in Lund, Sweden. Data sources included interviews, presentations, meeting notes, and other archival documents created between 2014 and 2017. To be included, data sources must have described or reflected upon the Genia adoption process. Iterative content analysis of data source materials was conducted by 2 qualitatively trained researchers to derive themes characterizing the mHealth clinical adoption process. Results: In total, 4 core themes characterized successful clinical integration of Genia in Lund: cultural readiness to use mHealth; use of weekly huddles to foster momentum and rapid iteration; engagement in incremental ``Genia Talk'' to motivate patient adoption; and co-design approach toward pediatric chronic care. Conclusions: Principles of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of mHealth technology into clinical care systems for pediatric CF care. ",
doi="10.2196/11080",
url="http://pediatrics.jmir.org/2018/2/e11080/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518297"
}


@Article{info:doi/10.2196/12397,
author="Dulli, Lisa
and Ridgeway, Kathleen
and Packer, Catherine
and Plourde, F. Kate
and Mumuni, Tolulope
and Idaboh, Tosin
and Olumide, Adesola
and Ojengbede, Oladosu
and McCarraher, R. Donna",
title="An Online Support Group Intervention for Adolescents Living with HIV in Nigeria: A Pre-Post Test Study",
journal="JMIR Public Health Surveill",
year="2018",
month="Nov",
day="28",
volume="4",
number="4",
pages="e12397",
keywords="adolescents",
keywords="digital health intervention",
keywords="HIV care continuum",
keywords="social support",
abstract="Background: Adolescents living with HIV (ALHIVs) enrolled in HIV treatment services experience greater loss to follow-up and suboptimal adherence than other age groups. HIV-related stigma, disclosure-related issues, lack of social support, and limited HIV knowledge impede adherence to antiretroviral therapy (ART) and retention in HIV services. The 90-90-90 goals for ALHIVs will only be met through strategies targeted to meet their specific needs. Objectives: We aimed to evaluate the feasibility of implementing a social media-based intervention to improve HIV knowledge, social support, ART adherence, and retention among ALHIV aged 15-19 years on ART in Nigeria. Methods: We conducted a single-group pre-post test study from June 2017 to January 2018. We adapted an existing support group curriculum and delivered it through trained facilitators in 5 support groups by using Facebook groups. This pilot intervention included five 1-week sessions. We conducted structured interviews with participants before and after the intervention, extracted clinical data, and documented intervention implementation and participation. In-depth interviews were conducted with a subset of participants at study completion. Quantitative data from structured interviews and group participation data were summarized descriptively, and qualitative data were coded and summarized. Results: A total of 41 ALHIV enrolled in the study. At baseline, 93\% of participants reported existing phone access; 65\% used the internet, and 64\% were Facebook users. In addition, 37 participants completed the 5-session intervention, 32 actively posted comments in at least one session online, and at least half commented in each of the 5 sessions. Facilitators delivered most sessions as intended and on-time. Participants were enthusiastic about the intervention. Aspects of the intervention liked most by participants included interacting with other ALHIVs; learning about HIV; and sharing questions, experiences, and fears. The key recommendations were to include larger support groups and encourage more group interaction. Specific recommendations on various intervention components were made to improve the intervention. Conclusions: This novel intervention was feasible to implement in a predominantly suburban and rural Nigerian setting. Social media may be leveraged to provide much-needed information and social support on platforms accessible and familiar to many people, even in resource-constrained communities. Our findings have been incorporated into the intervention, and an outcome study is underway. Trial Registration: ClinicalTrials.gov NCT03076996; https://clinicaltrials.gov/ct2/show/NCT03076996 (Archived by WebCite at http://www.webcitation.org/73oCCEBBC). ",
doi="10.2196/12397",
url="http://publichealth.jmir.org/2018/4/e12397/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30487116"
}


@Article{info:doi/10.2196/11679,
author="Lindsay, Sally
and Kolne, Kendall
and Cagliostro, Elaine",
title="Electronic Mentoring Programs and Interventions for Children and Youth With Disabilities: Systematic Review",
journal="JMIR Pediatr Parent",
year="2018",
month="Oct",
day="24",
volume="1",
number="2",
pages="e11679",
keywords="youth",
keywords="disability",
keywords="eHealth",
keywords="mentoring",
keywords="review",
keywords="peer support",
keywords="adolescent",
keywords="child",
keywords="disabled children",
keywords="disabled persons",
keywords="telemedicine",
abstract="Background: Children and youth with disabilities experience many challenges in their development, including higher risk of poor self-esteem, fewer friendships, and social isolation. Electronic mentoring is a potentially viable approach for youth with disabilities to access social and peer support within a format that reduces physical barriers to accessing mentors. Objective: Our objective was to synthesize and review the literature on the impact of electronic mentoring for children and youth with disabilities. Methods: We conducted a systematic review, completing comprehensive searches of 7 databases from 1993 to May 2018. We selected articles for inclusion that were peer-reviewed publications, had a sample of children or youth with disabilities (?25 years of age), and had empirical findings with at least one outcome focusing on the impact of electronic mentoring. Two reviewers independently applied the inclusion criteria, extracted the data, and rated the study quality before discussing the findings. Results: In the 25 studies meeting our inclusion criteria, 897 participants (aged 12-26, mean 17.4 years) were represented across 6 countries. Although the outcomes varied across the studies, of 11 studies testing significance, 9 (81\%) reported a significant improvement in at least one of the following: career decision making, self-determination, self-advocacy, self-confidence, self-management, social skills, attitude toward disability, and coping with daily life. The electronic mentoring interventions varied in their delivery format and involved 1 or more of the following: interactive websites, virtual environment, email, mobile apps, Skype video calls, and phone calls. A total of 13 studies involved one-to-one mentoring, 6 had group-based mentoring, and 6 had a combination of both. Conclusions: The evidence in this review suggests it is possible that electronic mentoring is effective for children and youth with disabilities. More rigorously designed studies are needed to understand the impact and effective components of electronic mentoring interventions. ",
doi="10.2196/11679",
url="http://pediatrics.jmir.org/2018/2/e11679/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518310"
}


@Article{info:doi/10.2196/10771,
author="Bashi, Nazli
and Fatehi, Farhad
and Fallah, Mina
and Walters, Darren
and Karunanithi, Mohanraj",
title="Self-Management Education Through mHealth: Review of Strategies and Structures",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Oct",
day="19",
volume="6",
number="10",
pages="e10771",
keywords="health education",
keywords="mHealth",
keywords="mobile apps",
keywords="mobile phone",
keywords="patient education",
keywords="self-management education",
abstract="Background: Despite the plethora of evidence on mHealth interventions for patient education, there is a lack of information regarding their structures and delivery strategies. Objective: This review aimed to investigate the structures and strategies of patient education programs delivered through smartphone apps for people with diverse conditions and illnesses. We also examined the aim of educational interventions in terms of health promotion, disease prevention, and illness management. Methods: We searched PubMed, Cumulative Index to Nursing and Allied Health Literature, Embase, and PsycINFO for peer-reviewed papers that reported patient educational interventions using mobile apps and published from 2006 to 2016. We explored various determinants of educational interventions, including the content, mode of delivery, interactivity with health care providers, theoretical basis, duration, and follow-up. The reporting quality of studies was evaluated according to the mHealth evidence and reporting assessment criteria. Results: In this study, 15 papers met the inclusion criteria and were reviewed. The studies mainly focused on the use of mHealth educational interventions for chronic disease management, and the main format for delivering interventions was text. Of the 15 studies, 6 were randomized controlled trials (RCTs), which have shown statistically significant effects on patients' health outcomes, including patients' engagement level, hemoglobin A1c, weight loss, and depression. Although the results of RCTs were mostly positive, we were unable to identify any specific effective structure and strategy for mHealth educational interventions owing to the poor reporting quality and heterogeneity of the interventions. Conclusions: Evidence on mHealth interventions for patient education published in peer-reviewed journals demonstrates that current reporting on essential mHealth criteria is insufficient for assessing, understanding, and replicating mHealth interventions. There is a lack of theory or conceptual framework for the development of mHealth interventions for patient education. Therefore, further research is required to determine the optimal structure, strategies, and delivery methods of mHealth educational interventions. ",
doi="10.2196/10771",
url="https://mhealth.jmir.org/2018/10/e10771/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30341042"
}


@Article{info:doi/10.2196/10213,
author="Castel, D. Amanda
and Qasmieh, Saba
and Greenberg, Daniel
and Ellenberger, Nicole
and Howell, Howard Tyriesa
and Griffith, Caleb
and Wilbourn, C. Brittany
and Ganesan, Kavitha
and Hussein, Nadia
and Ralte, Gabriel
and Rakhmanina, Natella",
title="Digital Gaming to Improve Adherence Among Adolescents and Young Adults Living With HIV: Mixed-Methods Study to Test Feasibility and Acceptability",
journal="JMIR Serious Games",
year="2018",
month="Oct",
day="15",
volume="6",
number="4",
pages="e10213",
keywords="youth",
keywords="HIV",
keywords="adherence",
keywords="video games",
keywords="Wisepill",
keywords="adolescents",
keywords="digital technology",
keywords="serious games",
abstract="Background: An estimated 50\% of adolescents and young adults (AYA) living with HIV are failing to adhere to prescribed antiretroviral treatment (ART). Digital games are effective in chronic disease management; however, research on gaming to improve ART adherence among AYA is limited. Objective: We assessed the feasibility and acceptability of video gaming to improve AYA ART adherence. Methods: Focus group discussions and surveys were administered to health care providers and AYA aged 13 to 24 years living with HIV at a pediatric HIV program in Washington, DC. During focus group discussions, AYA viewed demonstrations of 3 game prototypes linked to portable Wisepill medication dispensers. Content analysis strategies and thematic coding were used to identify adherence themes and gaming acceptance and feasibility. Likert scale and descriptive statistics were used to summarize response frequencies. Results: Providers (n=10) identified common adherence barriers and strategies, including use of gaming analogies to improve AYA ART adherence. Providers supported exploration of digital gaming as an adherence intervention. In 6 focus group discussions, 12 AYA participants identified disclosure of HIV status and irregular daily schedules as major barriers to ART and use of alarms and pillboxes as reminders. Most AYA were very or somewhat likely to use the demonstrated game prototypes to help with ART adherence and desired challenging, individually tailored, user-friendly games with in-game incentives. Game prototypes were modified accordingly. Conclusions: AYA and their providers supported the use of digital games for ART adherence support. Individualization and in-game incentives were preferable and informed the design of an interactive technology-based adherence intervention among AYA living with HIV. ",
doi="10.2196/10213",
url="http://games.jmir.org/2018/4/e10213/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30322838"
}


@Article{info:doi/10.2196/11058,
author="Kulandaivelu, Yalinie
and Lalloo, Chitra
and Ward, Richard
and Zempsky, T. William
and Kirby-Allen, Melanie
and Breakey, R. Vicky
and Odame, Isaac
and Campbell, Fiona
and Amaria, Khush
and Simpson, A. Ewurabena
and Nguyen, Cynthia
and George, Tessy
and Stinson, N. Jennifer",
title="Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study",
journal="JMIR Pediatr Parent",
year="2018",
month="Sep",
day="25",
volume="1",
number="2",
pages="e11058",
keywords="sickle cell",
keywords="adolescent",
keywords="cell phone",
keywords="self-management",
keywords="internet",
keywords="qualitative research",
keywords="needs assessment",
keywords="transitional care",
abstract="Background: Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease. Objective: The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development. Methods: A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis. Results: Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services. Conclusions: Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease--related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents. ",
doi="10.2196/11058",
url="http://pediatrics.jmir.org/2018/2/e11058/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518307"
}


@Article{info:doi/10.2196/10287,
author="McCann, Lisa
and McMillan, A. Kathryn
and Hewitt, Christopher",
title="An e-Prehabilitation System of Care for Teenagers and Young Adults Diagnosed With Cancer: Protocol for a Qualitative Co-Design Study",
journal="JMIR Res Protoc",
year="2018",
month="Sep",
day="12",
volume="7",
number="9",
pages="e10287",
keywords="digital health",
keywords="human factors",
keywords="co-design",
keywords="prehabilitation",
keywords="teenagers and young adults",
keywords="cancer",
keywords="mobile phone",
abstract="Background: A diagnosis of cancer in young adulthood can pose many different and unique challenges for individuals. The provision of adequate and appropriate information as well as care and support for teenagers and young adults at the time of diagnosis is central to their health care experience going forward. Moreover, appropriate and accessible information provision is critical to ensure that young individuals with cancer feel equipped and empowered to make decisions about, and be involved in, their treatment and recovery throughout their experience; this is a concept known as prehabilitation. As digital interventions and resources that support teenagers and young adults with cancer are an increasingly desirable part of health care provision, this study will focus on the development of an age- and population-appropriate electronic prehabilitation (e-Prehabilitation) system of care. Objective: We will conduct an exploratory, co-design research project that will inform the development of an e-Prehabilitation system of care to support teenagers and young adults diagnosed with cancer. A collaborative approach to data collection and prototype design will ensure that a patient-centered approach is embedded throughout. Methods: A qualitative, co-design study utilizing surveys, interviews, and focus group discussions is being conducted with teenagers and young adults, health care professionals, and technologists. Results: This research study is in progress; recruitment and data collection activities have commenced and findings are expected in early 2019. Conclusions: The findings of this study will have important implications for informing the future development and evaluation of an e-Prehabilitation system of care to support teenagers and young adults diagnosed with cancer. Registered Report Identifier: RR1-10.2196/10287 ",
doi="10.2196/10287",
url="http://www.researchprotocols.org/2018/9/e10287/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30209030"
}


@Article{info:doi/10.2196/formative.9963,
author="Lopez, N. Keila
and O'Connor, Michael
and King, Jason
and Alexander, James
and Challman, Melissa
and Lovick, K. Donna
and Goodly, Nicole
and Smith, Amelia
and Fawcett, Elliott
and Mulligan, Courtney
and Thompson, Debbe
and Fordis, Michael",
title="Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research",
journal="JMIR Formativ Res",
year="2018",
month="Sep",
day="11",
volume="2",
number="2",
pages="e16",
keywords="adolescent health",
keywords="chronic disease",
keywords="transitions of care",
keywords="health disparities",
keywords="mobile health",
keywords="mHealth",
keywords="patient empowerment",
keywords="patient involvement",
keywords="self-efficacy",
keywords="user-centered design",
abstract="Background: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to approximately 1.4 million survivors reaching adulthood. Successful transition and transfer from pediatric to adult care is crucial. Unfortunately, less than 30\% of adolescents with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status populations. Few CHD programs exist to facilitate successful transition. Objective: The goal of our study was to describe the formative research used to develop a prototype mobile app to facilitate transition to adult care for adolescents with CHD. Methods: A literature search about best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design. Results: The literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and 3 identified best practices in transition specific to CHD. A total of 402 adolescents aged 15 to 22 years (median 16 years) participated in semistructured interviews. The group was racially and ethnically diverse (12.6\% [51/402] African American and 37.8\% [152/402] Latino) and 42.0\% (169/402) female; 36.3\% (146/402) received public insurance. Most adolescents (313/402, 76.7\%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.0\% [275/348] of those aged 15 to 17 years and 61.1\% [33/54] of those aged 18 to 22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. When participants with moderate to severe CHD (313/402, 77.9\%) were asked about technology use, 94.2\% (295/313) reported having access to a mobile phone. Interviews with parents revealed limited interactions with the pediatric cardiologist about transition-related topics: 79.4\% (331/417) reported no discussions regarding future family planning, and 55.2\% (230/417) reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66.4\% (277/417) reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panels (2 groups of 3 adolescents each) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (eg, ``Can I exercise?''), a CHD story-blog forum, a mentorship platform, a question and answer space, and a checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and receive medication reminders. Based on this data, a prototype mobile app was created to assist in adolescent CHD transition. Conclusions: Formative research revealed that most adolescents with CHD had access to mobile phones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding adolescent and parent needs, interests, and concerns helped in the development of a mobile app with a broader, tailored approach for adolescents with CHD. ",
doi="10.2196/formative.9963",
url="http://formative.jmir.org/2018/2/e16/"
}


@Article{info:doi/10.2196/10285,
author="Sezgin, Emre
and Weiler, Monica
and Weiler, Anthony
and Lin, Simon",
title="Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study",
journal="J Med Internet Res",
year="2018",
month="Sep",
day="06",
volume="20",
number="9",
pages="e10285",
keywords="chronic disease",
keywords="chronic disease management",
keywords="digital health",
keywords="ecosystem",
keywords="qualitative research",
keywords="self-management",
keywords="transition to independence",
keywords="technology-based solutions",
abstract="Background: Chronic disease management is critical to quality of life for both teen patients with chronic conditions and their caregivers. However, current literature is largely limited to a specific digital health tool, method, or approach to manage a specific disease. Guiding principles on how to use digital tools to support the transition to independence are rare. Considering the physiological, psychological, and environmental changes that teens experience, the issues surrounding the transition to independence are worth investigating to develop a deeper understanding to inform future strategies for digital interventions. Objective: The purpose of this study was to inform the design of digital health solutions by systematically identifying common challenges among teens and caregivers living with chronic diseases. Methods: Chronically ill teens (n=13) and their caregivers (n=13) were interviewed individually and together as a team. Verbal and projective techniques were used to examine teens' and caregivers' concerns in-depth. The recorded and transcribed responses were thematically analyzed to identify and organize the identified patterns. Results: Teens and their caregivers identified 10 challenges and suggested technological solutions. Recognized needs for social support, access to medical education, symptom monitoring, access to health care providers, and medical supply management were the predominant issues. The envisioned ideal transition included a 5-component solution ecosystem in the transition to independence for teens. Conclusions: This novel study systematically summarizes the challenges, barriers, and technological solutions for teens with chronic conditions and their caregivers as teens transition to independence. A new solution ecosystem based on the 10 identified challenges would guide the design of future implementations to test and validate the effectiveness of the proposed 5-component ecosystem. ",
doi="10.2196/10285",
url="http://www.jmir.org/2018/9/e10285/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30190253"
}


@Article{info:doi/10.2196/jmir.9547,
author="Geense, W. Wytske
and van Gaal, GI Betsie
and Knoll, L. Jaqueline
and Maas, M. Nienke
and Kok, Gerjo
and Cornelissen, AM Elisabeth
and Nijhuis-van der Sanden, WG Maria",
title="Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial",
journal="J Med Internet Res",
year="2018",
month="Aug",
day="01",
volume="20",
number="8",
pages="e245",
keywords="child",
keywords="chronic kidney failure",
keywords="chronic kidney disease",
keywords="effect evaluation",
keywords="health promotion",
keywords="process evaluation",
abstract="Background: Parents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child's illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation. Objective: The objectives of our study were to (1) identify the outcome measures that are most likely to capture the potential benefit, (2) evaluate the potential effectiveness and effect size, and (3) evaluate recruitment, reach, the dose received, and context. Methods: We conducted a feasibility study with a two-armed, wait-list randomized controlled trial (RCT). Prior to baseline, parents (n=146) were randomly allocated to group 1 or group 2. After completing the baseline questionnaire, parents in group 1 were given access to e-Powered Parents, while those in group 2 received usual care. At the 6-month follow-up (T1), all parents received a questionnaire and parents in group 2 were given access to e-Powered Parents as well. After 1.5 years, through an extra measurement (T2), we evaluated the effect of long-term exposure. Outcomes were the child's quality of life (Child Vulnerability Scale), parental stress (Pediatric Inventory for Parents) and fatigue (Multidimensional Fatigue Inventory), self-efficacy in communication with health care professionals (Perceived Efficacy in Patient-Physician Interactions, PEPPI-5), and parental perceptions of family management (Family Management Measure). Floor and ceiling effects and percentage of parents showing no change in scores were calculated. We used linear mixed models to evaluate the potential effectiveness and effect sizes using the intention-to-treat and per-protocol analyses. In the process evaluation, we evaluated recruitment, reach, the dose received, and context using a questionnaire sent to the parents, log-in data, and a focus group interview with health care professionals. Results: At T1 (n=86) and T2 (n=51), no significant effects were found on any of the five outcomes. The PEPPI-5 showed ceiling effects and high percentages of parents showing no change between the measurement times. The information and interactive part of the intervention were used by 84\% (57/68) of the parents in group 1 and 49\% (32/65) of the parents in group 2. The information pages were visited most often. Overall, 64\% (85/133) of the parents logged in to the training platform and 31\% (26/85) actually used the training modules. Conclusions: We did not observe any significant effect on any of the outcomes. This could possibly be explained by the minimal use of the intervention and by parents' heterogeneity. For continued participation, we recommend a tailored intervention and further studies to find out whether and how online programs could be used to support parents in the management of their child's CKD. Trial Registration: Netherlands Trial Registry NTR4808; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4808 (Archived by WebCite at http://www.webcitation.org/719rCicvW) ",
doi="10.2196/jmir.9547",
url="http://www.jmir.org/2018/8/e245/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30068502"
}


@Article{info:doi/10.2196/10940,
author="Badawy, M. Sherif
and Cronin, M. Robert
and Hankins, Jane
and Crosby, Lori
and DeBaun, Michael
and Thompson, A. Alexis
and Shah, Nirmish",
title="Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review",
journal="J Med Internet Res",
year="2018",
month="Jul",
day="19",
volume="20",
number="7",
pages="e10940",
keywords="sickle cell",
keywords="self-management",
keywords="eHealth",
keywords="mHealth",
keywords="interventions",
keywords="internet",
keywords="anemia, sickle cell",
keywords="telemedicine",
abstract="Background: Sickle cell disease is an inherited blood disorder that affects over 100,000 Americans. Sickle cell disease--related complications lead to significant morbidity and early death. Evidence supporting the feasibility, acceptability, and efficacy of self-management electronic health (eHealth) interventions in chronic diseases is growing; however, the evidence is unclear in sickle cell disease. Objective: We systematically evaluated the most recent evidence in the literature to (1) review the different types of technological tools used for self-management of sickle cell disease, (2) discover and describe what self-management activities these tools were used for, and (3) assess the efficacy of these technologies in self-management. Methods: We reviewed literature published between 1995 and 2016 with no language limits. We searched MEDLINE, EMBASE, CINAHL, PsycINFO, and other sources. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Two independent reviewers screened titles and abstracts, assessed full-text articles, and extracted data from articles that met inclusion criteria. Eligible studies were original research articles that included texting, mobile phone--based apps, or other eHealth interventions designed to improve self-management in pediatric and adult patients with sickle cell disease. Results: Of 1680 citations, 16 articles met all predefined criteria with a total of 747 study participants. Interventions were text messaging (4/16, 25\%), native mobile apps (3/16, 19\%), Web-based apps (5/16, 31\%), mobile directly observed therapy (2/16, 13\%), internet-delivered cognitive behavioral therapy (2/16, 13\%), electronic pill bottle (1/16, 6\%), or interactive gamification (2/16, 13\%). Interventions targeted monitoring or improvement of medication adherence (5/16, 31\%); self-management, pain reporting, and symptom reporting (7/16, 44\%); stress, coping, sleep, and daily activities reporting (4/16, 25\%); cognitive training for memory (1/16, 6\%); sickle cell disease and reproductive health knowledge (5/16, 31\%); cognitive behavioral therapy (2/16, 13\%); and guided relaxation interventions (1/16, 6\%). Most studies (11/16, 69\%) included older children or adolescents (mean or median age 10-17 years; 11/16, 69\%) and 5 included young adults (?18 years old) (5/16, 31\%). Sample size ranged from 11 to 236, with a median of 21 per study: <20 in 6 (38\%), ?20 to <50 in 6 (38\%), and >50 participants in 4 studies (25\%). Most reported improvement in self-management--related outcomes (15/16, 94\%), as well as high satisfaction and acceptability of different study interventions (10/16, 63\%). Conclusions: Our systematic review identified eHealth interventions measuring a variety of outcomes, which showed improvement in multiple components of self-management of sickle cell disease. Despite the promising feasibility and acceptability of eHealth interventions in improving self-management of sickle cell disease, the evidence overall is modest. Future eHealth intervention studies are needed to evaluate their efficacy, effectiveness, and cost effectiveness in promoting self-management in patients with sickle cell disease using rigorous methods and theoretical frameworks with clearly defined clinical outcomes. ",
doi="10.2196/10940",
url="http://www.jmir.org/2018/7/e10940/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30026178"
}


@Article{info:doi/10.2196/10958,
author="Breakey, R. Vicky
and Bouskill, Vanessa
and Nguyen, Cynthia
and Luca, Stephanie
and Stinson, N. Jennifer
and Ahola Kohut, Sara",
title="Online Peer-to-Peer Mentoring Support for Youth with Hemophilia: Qualitative Needs Assessment",
journal="JMIR Pediatr Parent",
year="2018",
month="Jul",
day="10",
volume="1",
number="2",
pages="e10958",
keywords="hemophilia",
keywords="adolescents",
keywords="transition",
keywords="self-management",
keywords="education",
keywords="internet",
keywords="mentoring",
abstract="Background: To support adolescents through transition from pediatrics to adult care, health care providers and families help teens gain knowledge and develop self-management skills. Peer mentoring can provide meaningful support and has been associated with improved health outcomes in patients with other chronic conditions. Peer mentoring is an appealing way to provide support, but it is imperative to consider the unique needs of adolescents to ensure its success. Objective: The objective of our study was to identify the peer mentoring wants and needs of youth with hemophilia in order to guide the development of a new program. Methods: In this qualitative study, we interviewed a convenience sample of youth with hemophilia from 2 Canadian hemophilia treatment centers. Two iterative cycles of audiorecorded, semistructured individual interviews were conducted. Descriptive statistics and content analyses were used to organize data into categories that reflected emerging themes. Results: In total, we recruited 23 participants aged 12-20 years, with a mean age of 14.91 (2.57) years. When asked about program design, participants weighed the importance of flexibility in delivery (eg, Web-based, in person, text messaging [short message service]), content (eg, structured vs unstructured), frequency of sessions, and length of the program. Participants identified some potential challenges such as scheduling issues, comfort level for disease discussion, and discordant mentor-mentee personality types. The program was viewed as a positive medium for connecting peers with hemophilia. Conclusions: Adolescents with hemophilia expressed interest in a peer mentoring program and provided valuable insight that will be applied in the development of a peer mentoring program for youth with hemophilia. ",
doi="10.2196/10958",
url="http://pediatrics.jmir.org/2018/2/e10958/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518296"
}


@Article{info:doi/10.2196/mhealth.9319,
author="Jibb, A. Lindsay
and Stevens, J. Bonnie
and Nathan, C. Paul
and Seto, Emily
and Cafazzo, A. Joseph
and Johnston, L. Donna
and Hum, Vanessa
and Stinson, N. Jennifer",
title="Perceptions of Adolescents With Cancer Related to a Pain Management App and Its Evaluation: Qualitative Study Nested Within a Multicenter Pilot Feasibility Study",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Apr",
day="06",
volume="6",
number="4",
pages="e80",
keywords="pain",
keywords="adolescent",
keywords="cancer",
keywords="supportive care",
keywords="mHealth",
keywords="qualitative",
abstract="Background: Pain in adolescents with cancer is common and negatively impacts health-related quality of life. The Pain Squad+ smartphone app, capable of providing adolescents with real-time pain management support, was developed to enhance pain management using a phased approach (ie, systematic review, consensus conference and vetting, iterative usability testing cycles). A 28-day Pain Squad+ pilot was conducted with 40 adolescents with cancer to evaluate the feasibility of implementing the app in a future clinical trial and to obtain estimates of treatment effect. Objective: The objective of our nested qualitative study was to elucidate the perceptions of adolescents with cancer to determine the acceptability and perceived helpfulness of Pain Squad+, suggestions for app improvement, and satisfaction with the pilot study protocol. Methods: Post pilot study participation, telephone-based, semistructured, and audio-recorded exit interviews were conducted with 20 adolescents with cancer (12-18 years). All interviews were transcribed and independently coded by 2 study team members. Content analysis was conducted to identify data categories and overarching themes. Results: Five major themes comprising multiple categories and codes emerged. These themes focused on the acceptability of the intervention, acceptability of the study, the perceived active ingredients of the intervention, the suitability of the intervention to adolescents' lives, and recommendations for intervention improvement. Conclusions: Overall, Pain Squad+ and the pilot study protocol were acceptable to adolescents with cancer. Suggestions for intervention and study improvements will be incorporated into the design of a future randomized clinical trial (RCT) aimed at assessing the effectiveness of Pain Squad+ on adolescents with cancer health outcomes. ",
doi="10.2196/mhealth.9319",
url="http://mhealth.jmir.org/2018/4/e80/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29625951"
}


@Article{info:doi/10.2196/mhealth.8849,
author="McWilliams, Andrew
and Reeves, Kelly
and Shade, Lindsay
and Burton, Elizabeth
and Tapp, Hazel
and Courtlandt, Cheryl
and Gunter, Andrew
and Dulin, F. Michael",
title="Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Mar",
day="22",
volume="6",
number="3",
pages="e68",
keywords="engagement",
keywords="pediatric asthma",
keywords="shared decision-making",
keywords="health information technology",
abstract="Background: Asthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design. Objective: To describe a case study of a pediatric asthma SDM health IT solution's development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team. Methods: We adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) ``real-world users'' consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics. Results: Using this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100\% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app. Conclusions: This project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process. ",
doi="10.2196/mhealth.8849",
url="http://mhealth.jmir.org/2018/3/e68/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29567637"
}


@Article{info:doi/10.2196/diabetes.7221,
author="Dobson, Rosie
and Whittaker, Robyn
and Murphy, Rinki
and Khanolkar, Manish
and Miller, Steven
and Naylor, Joanna
and Maddison, Ralph",
title="The Use of Mobile Health to Deliver Self-Management Support to Young People With Type 1 Diabetes: A Cross-Sectional Survey",
journal="JMIR Diabetes",
year="2017",
month="Feb",
day="15",
volume="2",
number="1",
pages="e4",
keywords="mHealth",
keywords="diabetes mellitus",
keywords="mobile phone",
keywords="mobile applications",
keywords="text messages",
abstract="Background: Young people living with type 1 diabetes face not only the challenges typical of adolescence, but also the challenges of daily management of their health and evolving understanding of the impact of their diagnosis on their future. Adolescence is a critical time for diabetes self-management, with a typical decline in glycemic control increasing risk for microvascular diabetes complications. To improve glycemic control, there is a need for evidence-based self-management support interventions that address the issues pertinent to this population, utilizing platforms that engage them. Increasingly, mobile health (mHealth) interventions are being developed and evaluated for this purpose with some evidence supporting improved glycemic control. A necessary step to enhance effectiveness of such approaches is to understand young people's preferences for this mode of delivery. Objective: A cross-sectional survey was conducted to investigate the current and perceived roles of mHealth in supporting young people to manage their diabetes. Methods: Young adults (16-24 years) with type 1 diabetes in Auckland, New Zealand, were invited to take part in a survey via letter from their diabetes specialist. Results: A total of 115 young adults completed the survey (mean age 19.5 years; male 52/115, 45\%; European 89/115, 77\%), with all reporting they owned a mobile phone and 96\% (110/115) of those were smartphones. However, smartphone apps for diabetes management had been used by only 33\% (38/115) of respondents. The most commonly reported reason for not using apps was a lack of awareness that they existed. Although the majority felt they managed their diabetes well, 63\% (72/115) reported wanting to learn more about diabetes and how to manage it. A total of 64\% (74/115) respondents reported that they would be interested in receiving diabetes self-management support via text message (short message service, SMS). Conclusions: Current engagement with mHealth in this population appears low, although the findings from this study provide support for the use of mHealth in this group because of the ubiquity and convenience of mobile devices. mHealth has potential to provide information and support to this population, utilizing mediums commonplace for this group and with greater reach than traditional methods. ",
doi="10.2196/diabetes.7221",
url="http://diabetes.jmir.org/2017/1/e4/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30291057"
}


@Article{info:doi/10.2196/resprot.6629,
author="Brazeau, Anne-Sophie
and Nakhla, Meranda
and Wright, Michael
and Panagiotopoulos, Constadina
and Pacaud, Daniele
and Henderson, M{\'e}lanie
and Rahme, Elham
and Da Costa, Deborah
and Dasgupta, Kaberi",
title="Stigma and Its Impact on Glucose Control Among Youth With Diabetes: Protocol for a Canada-Wide Study",
journal="JMIR Res Protoc",
year="2016",
month="Dec",
day="15",
volume="5",
number="4",
pages="e242",
keywords="type 1 diabetes",
keywords="youth",
keywords="stigma",
keywords="perception",
keywords="well-being",
abstract="Background: Stigma in chronic disease involves unwarranted rejection, judgement, or exclusion by others based on the chronic disease itself. Objective: We aim to determine the prevalence of stigma among youth and young adults with type 1 diabetes in Canada, to assess associations between stigma and glycemic control, and to explore ways to address stigma related to type 1 diabetes. Methods: The study includes 3 distinct phases: (1) refinement of survey questions, (2) assessment of test-retest reliability, and (3) a data collection and analysis phase (online survey and mailed-in capillary blood sample to assess hemoglobin A1c). A total of 380 youth and young adults (14 to 24 years old) with type 1 diabetes are being recruited through social media and clinic posters. Results: Phases 1 and 2 are complete, and phase 3 is in progress. Thirty participants completed phase 2. The survey includes the Barriers to Diabetes Adherence in adolescent scale (intraclass correlation [ICC]=0.967, 95\% CI 0.931-0.984), the Self-Efficacy for Diabetes Self-Management measure (ICC=0.952, 95\% CI 0.899-0.977), the World Health Organization-5 Well-Being Index (ICC=0.860, 95\% CI 0.705-0.933), 12 closed-ended questions, and an additional 5 open-ended questions to explore challenges and solutions developed by the team of experts, including a patient representative. Conclusions: This will be the first large-scale survey to estimate the prevalence of stigma in young people with type 1 diabetes. The results of this study will allow for an appreciation of the magnitude of the problem and the need for developing and implementing solutions. This work is intended to provide an initial understanding of youth perspectives on the challenges of living with type 1 diabetes and will serve as a foundation for future research and action to help youth improve their experience of living with diabetes. Trial Registration: ClinicalTrials.gov NCT02796248, https://clinicaltrials.gov/ct2/show/NCT02796248 (Archived at http://www.webcitation.org/6mhenww3o). ",
doi="10.2196/resprot.6629",
url="http://www.researchprotocols.org/2016/4/e242/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27979791"
}


@Article{info:doi/10.2196/resprot.5817,
author="Thompson, Debbe
and Cullen, W. Karen
and Redondo, J. Maria
and Anderson, Barbara",
title="Use of Relational Agents to Improve Family Communication in Type 1 Diabetes: Methods",
journal="JMIR Res Protoc",
year="2016",
month="Jul",
day="28",
volume="5",
number="3",
pages="e151",
keywords="adolescents",
keywords="family communication",
keywords="pre-adolescents",
keywords="relational agent",
keywords="type 1 diabetes",
abstract="Background: Physiological and environmental risk factors interact to undermine blood glucose control during early adolescence. This has been documented to be associated with family conflict and poor adherence to diabetes management tasks. Family Teamwork is an efficacious program demonstrated to enhance family communication and reduce conflict during this vulnerable period. It was designed to be delivered to families in-person, which limited reach and potential impact. Objective: The purpose of this paper is to present the protocol for adapting Family Teamwork for Web-based delivery. Methods: Formative research with health care providers, parents, and adolescents will help modify Family Teamwork for Web-based delivery by a relational agent (ie, a computerized character with human-like features and actions). Sessions will be interactive, requiring both parent and adolescent participation, with the relational agent serving as a health coach. After programming, usability testing will be conducted to help ensure the program is easy to use. Video and instructional materials will be developed to facilitate use, and a small pilot study will be conducted to assess feasibility. Families will provide written informed consent prior to participation in any phase of the study. The Institutional Review Board at Baylor College of Medicine reviewed and approved the protocol (H-37245). Results: Formative research is underway. No results are available at this time. Conclusions: This research has the potential to make an important contribution to diabetes management by using technology to enhance the reach of an efficacious program. ",
doi="10.2196/resprot.5817",
url="http://www.researchprotocols.org/2016/3/e151/",
url="http://www.ncbi.nlm.nih.gov/pubmed/27468762"
}


@Article{info:doi/10.2196/resprot.4159,
author="Majeed-Ariss, Rabiya
and Hall, G. Andrew
and McDonagh, Janet
and Fallon, Deborah
and Swallow, Veronica",
title="Mobile Phone and Tablet Apps to Support Young People's Management of Their Physical Long-Term Conditions: A Systematic Review Protocol",
journal="JMIR Res Protoc",
year="2015",
month="Apr",
day="07",
volume="4",
number="2",
pages="e40",
keywords="mobile app",
keywords="mobile phone",
keywords="protocol",
keywords="smartphone",
keywords="tablets",
keywords="young people",
keywords="long-term conditions",
keywords="chronic conditions",
keywords="management",
keywords="systematic review",
abstract="Background: The prevalence of long-term or chronic conditions that limit activity and reduce quality of life in young people aged 10-24 years is rising. This group has distinct health care needs and requires tailored support strategies to facilitate increasing personal responsibility for the management of their condition wherever possible, as they mature. Mobile phone and tablet mobile technologies featuring software program apps are already well used by young people for social networking or gaming. They have also been utilized in health care to support personal condition management, using condition-specific and patient-tailored software. Such apps have much potential, and there is an emerging body of literature on their use in a health context making this review timely. Objective: The objective of this paper is to develop a systematic review protocol focused on identifying and assessing the effectiveness of mobile phone and tablet apps that support young people's management of their chronic conditions. Methods: The search strategy will include a combination of standardized indexed search terms and free-text terms related to the key concepts of young people; long-term conditions and mobile technology. Peer-reviewed journal articles published from 2003 that meet the inclusion and exclusion criteria will be identified through searching the generated hits from 5 bibliographical databases. Two independent reviewers will screen the titles and abstracts to determine which articles focus on testing interventions identified as a mobile phone or tablet apps, and that have been designed and delivered to support the management of long-term conditions in young people aged 10-24 years. Data extraction and quality assessment tools will be used to facilitate consistent analysis and synthesis. It is anticipated that several studies will meet the selection criteria but that these are likely to be heterogeneous in terms of study design, reported outcomes, follow-up times, participants' age, and health condition. Sub-group analyses will be undertaken and where possible meta-analyses will take place. Results: This review will synthesize available knowledge surrounding tablet and mobile phone apps that support management of long term physical health conditions in young people. The findings will be synthesized to determine which elements of the technologies were most effective for this population. Conclusions: This systematic review aims to synthesize existing literature in order to generate findings that will facilitate the development of an app intervention. The review will form the first phase of development and evaluation of a complex intervention as recommended by the United Kingdom Medical Research Council. The knowledge gained from the review will be verified in subsequent phases, which will include primary qualitative work with health professionals and young people with long term conditions as research participants. Young people living with long-term conditions will be involved as co-researchers and consumer advisors in all subsequent phases to develop and evaluate an app to support the management of long-term physical health conditions. Trial Registration: PROSPERO International prospective register of systematic reviews: CRD42014015418; http://www.crd.york.ac.uk/PROSPERO/display\_record.asp?ID=CRD42014015418\#.VRqCpTpnL8E (Archived by Webcite at http://www.webcitation.org/6XREcWqQY). ",
doi="10.2196/resprot.4159",
url="http://www.researchprotocols.org/2015/2/e40/",
url="http://www.ncbi.nlm.nih.gov/pubmed/25854293"
}