A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings (Preprint)

• DOI: 10.2196/preprints.19413
• Publication Date: 2020-04-20T22:20:49Z
• Authors: Sarah B Rutland; Rikard Palmer Ber...; Andreas Hager; Robin Geurs; Cathy Mims; Hector H Gutierrez; Gabriela R Oates
• Keywords: mHealth; Thematic Analysis; Self-Management

<sec> <title>BACKGROUND</title> Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary team. The limited exchange of information outside the impedes optimal disease self-management, patient engagement, shared decision making. </sec> <title>OBJECTIVE</title> aim this study to adapt mobile health (mHealth) app originally developed in Sweden needs patients, families, providers CF center United States test it as platform for sharing patient-generated data <title>METHODS</title> Focus groups patients CF, adolescents caregivers children were conducted determine what modifications necessary. group analyzed using thematic analysis, emergent themes ranked according desirability technical feasibility. mHealth was then modified meet identified preferences, flow secure Research Electronic Data Capture database tested. Protocols management clinical follow-up also developed. <title>RESULTS</title> A total 5 focus 21 participants conducted. Recommended pertained all functionalities platform, including tracking symptoms, treatments, activities care; creating organizing medication lists setting up reminders; generating reports team; language presentation; privacy; settings accounts. Overall, recommended changes align US standards care, people their requested more functionalities, both suggested inclusion mental tracker well detailed response options precise language. Beta testers reported issues related translatability environment various bugs. <title>CONCLUSIONS</title> This demonstrated importance identifying preferences target users stakeholders before adopting existing solutions. All relevant perspectives, those clinicians, caregivers, should be thoroughly considered end users’ evidence-based practice recommendations. <title>CLINICALTRIAL</title> <p />