Transfer and transition in congenital heart disease

Eva Goossens, Adrienne H. Kovacs, Andrew S. Mackie, Philip Moons

Research output: Chapter in Book/Report/Conference proceedingChapter

2 Scopus citations


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.

Original languageEnglish (US)
Title of host publicationPediatric and Congenital Cardiology, Cardiac Surgery and Intensive Care
PublisherSpringer-Verlag London Ltd
Number of pages17
ISBN (Electronic)9781447146193
ISBN (Print)9781447146186
StatePublished - Jan 1 2014
Externally publishedYes


  • Adolescence
  • Adult congenital heart disease
  • Adults
  • Care process
  • Chronic disease
  • Continuity of care
  • Development
  • Developmental milestones
  • Heart defects, congenital
  • Outcomes
  • Pediatrics
  • Quality of care
  • Transfer
  • Transfer of care
  • Transition
  • Transition program
  • Young adult

ASJC Scopus subject areas

  • Medicine(all)


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