Transfer and transition in congenital heart disease

Abstract

Over the past decades, survival of children born with congenital heart disease has increased significantly. This has resulted in an exponential growth in the number of adult patients, which brings challenges to the organization of adult congenital heart disease care. Since patients with congenital heart disease are prone to develop late complications, lifelong specialized follow-up is recommended. International guidelines stress the importance of providing uninterrupted, age, and developmentally appropriate health care to patients with congenital heart disease throughout their life-span. During childhood, care is provided by pediatric-focused providers. This care should ideally be transferred to adult-focused providers or programs when the patient reaches adulthood. Transfer of care should, however, be preceded by a transition process in which patients learn about their condition and develop self-management and self-advocacy skills to manage their health. This chapter provides an overview of the literature regarding transfer and transition in patients with congenital heart disease. The evidence highlighting the importance of transfer and transition is described, and recommendations to improve transitional care are summarized. An overview of developmental milestones, skills, and educational topics is offered, in order to provide hands-on information for professionals caring for adolescents and young adults with congenital heart disease.