@Article{info:doi/10.2196/13452,
author="Creary, Susan
and Chisolm, Deena
and Stanek, Joseph
and Hankins, Jane
and O'Brien, Sarah H",
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; children; sickle cell disease; mobile health; mhealth; adherence; 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="https://doi.org/10.2196/13452",
url="http://www.ncbi.nlm.nih.gov/pubmed/31397291"
}


@Article{info:doi/10.2196/12042,
author="Low, Jac Kee
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; adolescent; self-management; transition to adult care; disease management; 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="https://doi.org/10.2196/12042",
url="http://www.ncbi.nlm.nih.gov/pubmed/31322129"
}


@Article{info:doi/10.2196/12258,
author="Carlsen, Katrine
and Hald, Mette
and Dubinsky, Marla C
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; adolescents; transition; transfer; 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="https://doi.org/10.2196/12258"
}


@Article{info:doi/10.2196/11761,
author="Dijkstra, Alie
and Heida, Anke
and van Rheenen, Patrick Ferry",
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; inflammatory bowel disease; health care improvement; implementation science; 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="https://doi.org/10.2196/11761",
url="http://www.ncbi.nlm.nih.gov/pubmed/30924785"
}


@Article{info:doi/10.2196/10401,
author="Grande, Stuart W
and Longacre, Meghan R
and Palmblad, Karin
and Montan, Meera V
and Berquist, Rikard P
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; interviews; health communication; 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="https://doi.org/10.2196/10401",
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, Rikard Palmer
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; mHealth; mobile phone; pediatrics; qualitative case study; 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="https://doi.org/10.2196/11080"
}


@Article{info:doi/10.2196/12397,
author="Dulli, Lisa
and Ridgeway, Kathleen
and Packer, Catherine
and Plourde, Kate F
and Mumuni, Tolulope
and Idaboh, Tosin
and Olumide, Adesola
and Ojengbede, Oladosu
and McCarraher, Donna R",
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; digital health intervention; HIV care continuum; 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="https://doi.org/10.2196/12397",
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; disability; eHealth; mentoring; review; peer support; adolescent; child; disabled children; disabled persons; 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="https://doi.org/10.2196/11679"
}


@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; mHealth; mobile apps; mobile phone; patient education; 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="https://doi.org/10.2196/10771",
url="http://www.ncbi.nlm.nih.gov/pubmed/30341042"
}


@Article{info:doi/10.2196/10213,
author="Castel, Amanda D
and Qasmieh, Saba
and Greenberg, Daniel
and Ellenberger, Nicole
and Howell, Tyriesa Howard
and Griffith, Caleb
and Wilbourn, Brittany C
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; HIV; adherence; video games; Wisepill; adolescents; digital technology; 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="https://doi.org/10.2196/10213",
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, William T
and Kirby-Allen, Melanie
and Breakey, Vicky R
and Odame, Isaac
and Campbell, Fiona
and Amaria, Khush
and Simpson, Ewurabena A
and Nguyen, Cynthia
and George, Tessy
and Stinson, Jennifer N",
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; adolescent; cell phone; self-management; internet; qualitative research; needs assessment; 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="https://doi.org/10.2196/11058"
}


@Article{info:doi/10.2196/10287,
author="McCann, Lisa
and McMillan, Kathryn A
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; human factors; co-design; prehabilitation; teenagers and young adults; cancer; 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="https://doi.org/10.2196/10287",
url="http://www.ncbi.nlm.nih.gov/pubmed/30209030"
}


@Article{info:doi/10.2196/formative.9963,
author="Lopez, Keila N
and O'Connor, Michael
and King, Jason
and Alexander, James
and Challman, Melissa
and Lovick, Donna K
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; chronic disease; transitions of care; health disparities; mobile health; mHealth; patient empowerment; patient involvement; self-efficacy; 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/",
url="https://doi.org/10.2196/formative.9963"
}


@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; chronic disease management; digital health; ecosystem; qualitative research; self-management; transition to independence; 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="https://doi.org/10.2196/10285",
url="http://www.ncbi.nlm.nih.gov/pubmed/30190253"
}


@Article{info:doi/10.2196/jmir.9547,
author="Geense, Wytske W
and van Gaal, Betsie GI
and Knoll, Jaqueline L
and Maas, Nienke M
and Kok, Gerjo
and Cornelissen, Elisabeth AM
and Nijhuis-van der Sanden, Maria WG",
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; chronic kidney failure; chronic kidney disease; effect evaluation; health promotion; 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="https://doi.org/10.2196/jmir.9547",
url="http://www.ncbi.nlm.nih.gov/pubmed/30068502"
}


@Article{info:doi/10.2196/10940,
author="Badawy, Sherif M
and Cronin, Robert M
and Hankins, Jane
and Crosby, Lori
and DeBaun, Michael
and Thompson, Alexis A
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; self-management; eHealth; mHealth; interventions; internet; anemia, sickle cell; 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="https://doi.org/10.2196/10940",
url="http://www.ncbi.nlm.nih.gov/pubmed/30026178"
}


@Article{info:doi/10.2196/10958,
author="Breakey, Vicky R
and Bouskill, Vanessa
and Nguyen, Cynthia
and Luca, Stephanie
and Stinson, Jennifer N
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; adolescents; transition; self-management; education; internet; 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="https://doi.org/10.2196/10958"
}


@Article{info:doi/10.2196/mhealth.9319,
author="Jibb, Lindsay A
and Stevens, Bonnie J
and Nathan, Paul C
and Seto, Emily
and Cafazzo, Joseph A
and Johnston, Donna L
and Hum, Vanessa
and Stinson, Jennifer N",
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; adolescent; cancer; supportive care; mHealth; 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="https://doi.org/10.2196/mhealth.9319",
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, Michael F",
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; pediatric asthma; shared decision-making; 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="https://doi.org/10.2196/mhealth.8849",
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; diabetes mellitus; mobile phone; mobile applications; 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="https://doi.org/10.2196/diabetes.7221",
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; youth; stigma; perception; 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="https://doi.org/10.2196/resprot.6629",
url="http://www.ncbi.nlm.nih.gov/pubmed/27979791"
}


@Article{info:doi/10.2196/resprot.5817,
author="Thompson, Debbe
and Cullen, Karen W
and Redondo, Maria J
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; family communication; pre-adolescents; relational agent; 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="https://doi.org/10.2196/resprot.5817",
url="http://www.ncbi.nlm.nih.gov/pubmed/27468762"
}


@Article{info:doi/10.2196/resprot.4159,
author="Majeed-Ariss, Rabiya
and Hall, Andrew G
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; mobile phone; protocol; smartphone; tablets; young people; long-term conditions; chronic conditions; management; 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="https://doi.org/10.2196/resprot.4159",
url="http://www.ncbi.nlm.nih.gov/pubmed/25854293"
}