@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"
}