Top Things to Know: Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease

Published: March 17, 2022

  1. This update to the 2011 statement Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease (CHD) reviews the recent evidence regarding transition and provides resources, components and suggestions for development of CHD transition programs with the goals of improving patient knowledge, self-management and self-efficacy skills to the level they are capable in order to eventually integrate smoothly into adult-oriented health care.
  2. It is now expected that most individuals with congenital heart disease will survive to adulthood, including those with complex heart conditions. Maintaining lifelong medical care requires those with CHD to eventually transfer from pediatric to adult-oriented health care.
  3. Developing health care transition skills and gaining as much independence as possible in managing one’s own health care is imperative to this process and to ongoing medical and psychosocial success.
  4. This statement specifically updates 3 sections relevant to transition programming: 1) review of specific factors to consider including social determinants of health, psychosocial well-being and neurocognitive status, 2) review of costs of inadequate transition including the public health burden and the impairment in individual quality of life (QoL) and 3) discuss considerations and suggestions for transition program design including communication platforms, a family approach and individual models.
  5. While this statement update reviews recent literature surrounding transitions of care for individuals with CHD, there remain significant knowledge gaps regarding the ideal timing and methods of transition, and barriers to transition and transfer remain, particularly for underserved populations.
  6. The consequences of poor health care transition are significant and garnering outcomes and information through organized, multi-faceted, collaborative approaches to transition is critical to improving the life-long care of individuals with CHD.
  7. Understanding the concepts behind transition and transfer and implementing solutions are critical to providing optimal care to teens and young adults with CHD. Accomplishing this goal requires a broad understanding of patient, health care professional and system barriers in an effort to minimize health disparities for those from underrepresented racial and ethnic groups and under-resourced communities.
  8. Programs should develop a proactive, consistent, and sustainable approach to transition that includes educational curricula, regular reinforcement of concepts, engagement of patients and families, and periodic assessments.
  9. Determination of the most effective programs and components are still being developed and will require further prospective research.
  10. With a coordinated and comprehensive effort, CHD patients can maintain congenital heart care with a smooth transition and transfer to adult oriented care.


John AS, Jackson JL, Moons P, Uzark K, Mackie AS, Timmins S, Lopez KN, Kovacs AH, Gurvitz M; on behalf of the American Heart Association Adults With Congenital Heart Disease Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young and the Council on Clinical Cardiology; Council on Cardiovascular and Stroke Nursing; Council on Arteriosclerosis, Thrombosis and Vascular Biology; and Stroke Council. Advances in managing transition to adulthood for adolescents with congenital heart disease: a practical approach to transition program design: a scientific statement from the American Heart Association. J Am Heart Assoc. 2022;11:e025278. doi: 10.1161/JAHA.122.025278