The Impact of an Innovative eHealth Transition Intervention on Self-Management Skills Among Young Adults With Congenital Heart Disease

Congenital heart disease (CHD) survivors constitute one of the fastest growing populations in adult cardiology practices. This population is vulnerable to gaps in care, particularly as they graduate from the pediatric to adult healthcare system, yet their healthcare needs are complex, costly, and chronic. With this submission, we focus on transitions in care (TiC) from pediatric to adult healthcare with a research plan designed to optimize TiC outcomes. Despite universal health insurance, clinical programs have insufficient resources to provide transition preparation for adolescents with cardiac disease. This likely reflects a lack of human and financial resources, geographic distance for patients and families living in rural communities, and/or a "process" problem wherein no one is directly accountable for transition. Nonetheless, Canadian policy mandates transfer to the adult healthcare system at age 18 regardless of transition readiness.

2.1 Design. Cluster RCT with 2 arms conducted in accordance with CONSORT guidelines within a mixed methods convergent design. The cluster design will minimize cross-contamination. The qualitative and quantitative data will be collected concurrently, and the data merged to ensure that intervention effectiveness is fully understood.

2.2 Planned trial interventions. This study will compare (i) access to the app vs. our team's established 1-on-1 nurse-led TiC intervention.

The App: Content of the app will be developed during Phase 1 in conjunction with the PFAC. A study registered nurse (RN) will orient participants to the app, provide them with a unique username and password, and help them create an individualized MyHealth passport (note that CHD transition guidelines recommend the use of health passports). The anticipated duration is 30 minutes. A research assistant (RA) will be available to participants throughout the study period to answer questions about the app. System-generated automatic text messages will be sent to participants every month to remind them about the app. The RA will check in with participants every 3 months. Those who do not use the app over a 3-month period will be flagged to identify psychological and environmental barriers to app use.

Nurse-led TiC intervention: There will be two cardiology RNs, each with adolescent experience, at each site who are different from the RN working with participants in the app group, to avoid cross contamination. The intervention will be provided during a single 60-75 minute session with the RN; this was the time required in the CHAPTER 1 and 2 Studies. Sessions will occur on the same day as a clinic appointment. Sessions will be interactive and engaging. Individual sessions, in contrast to a group, allow for the content to be participant-specific and at a pace compatible with the participant and their cognitive and social abilities. This intervention, already refined by our study team, will focus on increasing knowledge about the adolescent's CHD and promotion of self-management and self-efficacy skills.