Grant: Team Grant: TiC - Stream 2 - eHIPP solutions for transitions in care gaps

There have been major advances in the care of children born with heart defects ("congenital heart disease"- CHD) over the past 3 decades. Now over 90% of children with CHD reach adulthood. However, adolescent and young adult "survivors" are at risk of further heart problems. Unfortunately, most have very little understanding of their CHD and they lack confidence communicating with doctors and nurses about their heart. Over half do not attend specialized adult CHD clinics after graduating from their children's hospital, despite being advised to do so. This increases the risk that new heart problems, which may develop in early adulthood, will be discovered too late. Transition is the planned movement of adolescents with lifelong health conditions from child to adult healthcare. The Canadian Pediatric Society and other organizations have published guidelines about how children's hospitals should help adolescents prepare for the move to adult healthcare. Nurse-led programs to help with transition are effective but time-consuming, expensive, and not easily accessible to adolescents living in rural communities. However, smartphone apps are widely accessible and may be helpful in providing important transition information and coping strategies to adolescents as they enter adult health care. The objective of this research is to determine whether a transition app is better than a nurse-led transition intervention in preparing adolescents (age 16-17) with CHD to take on responsibility for their healthcare (self-management). We will enroll 188 participants across 5 children's hospitals. Each participant will randomly (like the flip of a coin) be assigned to either receive the transition app or the nurse-led transition intervention. We will also determine if the transition app results in better knowledge of their heart condition, greater self-efficacy, timelier first appointments in the adult health care system, and cost savings relative to the nurse-led transition program.