Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to the adult congenital heart disease

PURPOSE: To investigate the expectations and experiences of adolescents on transferring from a pediatric cardiology program to an adult congenital heart disease program. METHODS: A qualitative, phenomenologic study was conducted, in which semi-structured, in-depth interviews were performed with 14 adolescents (aged 15-17 years) with congenital heart disease. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using procedures described by Colaizzi. RESULTS: The study identified six themes that characterized adolescents' views of the transfer process: leaving pediatric cardiology was viewed as normal; leaving behind familiar surroundings; a positive wait-and-see attitude toward the adult congenital heart disease program; adjusting to a new environment; a need for better information; and a shift in roles between the adolescent and his parents. CONCLUSION: Although adolescents with congenital heart disease have a positive attitude toward transferring to an adult congenital heart disease program, they identified aspects of the transfer that healthcare professionals need to address. Patients and their families should be prepared for the transfer by informing them about the adult program and its healthcare providers. A formal transition program can play a role in this respect.