Congenital Heart Disease
Multistakeholder Recommendations for CHD Care Transitions
Article full title: Multistakeholder recommendations for supporting patients and families transitioning from paediatric to adult congenital heart disease care
Study aims: Existing Congenital Heart Disease (CHD) transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences.
What we did: We engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops.
What we found: Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones’ life. The health care team should provide this information and education. Peer support should be offered when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person.