Grant: Team Grant: Congenital Heart Disease (CHD) - Care Transitions

Most children with congenital heart disease (CHD) survive to adulthood. This success story has raised awareness that survivors of CHD are not cured, and in fact many are at risk of new heart problems related to their CHD that can appear at any age. Lifelong specialized care is needed, as are transitions in care from one life stage to the next. These care transitions are typically difficult for patients and families. Our team has identified three key transition points across the lifespan that need further study: transition from pediatric to adult healthcare, through pregnancy and into early parenthood, and from active care to end-of-life care. Having a lifelong condition like CHD predisposes to anxiety, depression, and social isolation. Adolescents and young adults have identified that connection with other young people would be helpful during the move from pediatric to adult care. Our team has developed a peer support program. As part of this proposal, we will train peer mentors to provide 1-on-1 virtual peer support to mentees age 16-25 years. pregnancy and into early parenthood. We will develop and evaluate a peer mentor support program for pregnant women, or for men with CHD whose partner is pregnant. Unfortunately, persons with CHD have a shortened life span, and benefit from serious illness conversations with a cardiologist that are appropriately timed and delivered with sensitivity. Our team will use Canadian data to identify age at death that is specific to a variety of CHD types. This will help doctors and patients better understand prognosis. We will also identify criteria for initiating serious illness conversations and develop and evaluate short educational videos designed to train CHD specialists about these conversations.