The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study (Preprint)

Abstract

BACKGROUND Innovative approaches are needed to address the self-management needs of youth with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative e-health program called “Teens Taking Charge”: Managing OI Online”, hereafter named “Teens OI”. This program seeks to optimize self-management, facilitate successful transition to adult care, and address a critical gap in the quality of care for youth with OI. OBJECTIVE The study objectives are to: (1) design and develop an English and French version of the Teens OI, and (2) to test the usability of Teens OI in terms of: (a) efficiency, (b) effectiveness, and (c) satisfaction, from the perspectives of youth with OI and their parents. METHODS A user-centered design is presently in progress to design and development Teens OI. A “Website Design and Development Council” (i.e. Council) has been convened, with 20 youth/parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of Teens OI will ensue in four iterative cycles with 32 youth/parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are being analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. RESULTS An eight-person, interdisciplinary, Teens OI council, comprised of four healthcare professionals, three youth and young adults with OI, and one parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with ten youth with OI with or without their parent (n=6). Data analysis is in-progress. Aim 2 is ethically approved and will commence following completion of content development. Preliminary analysis indicates that the following topics need to be prioritized for the youth: mental health, pain, accessibility, medical care, education, community, and parental care. CONCLUSIONS The proposed study will design and develop a self-management and transitional care program for youth with OI in partnership with patients, caregivers, and healthcare professionals. This study leverages youth’s openness to adopt e-health technologies to meet their needs and has the potential to actively engage them to autonomously manage their life-long condition, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioned from pediatric to adult care is at risk of various adverse events associated with transition.