New AHA Guidance on Transition to Adult Congenital HD Care

Most people who are born with a congenital heart defect (CHD), including complex heart conditions, now survive into adulthood, and the smooth transition from pediatric to adult-centered care is key to their health, survival and quality of life, the American Heart Association (AHA) says in a new scientific statement.

Adolescents and young adults who are ready to transition from pediatric to adult care are estimated to make up 15%–20% of the overall population with CHD in the US.

“As physicians caring for adults with congenital heart disease, we see the consequences of patients who fall out of care and then return to care when they feel sick,” Anitha S. John, MD, PhD, chair of the scientific statement writing group, says in a news release.

“At that point, they have been without medical care for a period of time, and when they return to the healthcare system, they may have developed complications that could have been avoided had they remained in care,” adds John, medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, Washington, DC.

The statement was published online today in the Journal of the American Heart Association.

The AHA first issued a scientific statement on best practices for managing the transition to adult-centered care for CHD in 2011.

Since then, efforts have been made to include transition programming as part of pediatric CHD programs, but there remain “significant challenges” to successful implementation, the writing group notes.

The updated statement summarizes the latest research regarding specific considerations in designing and creating successful transition programs for young people with CHD. It emphasizes the need for an interdisciplinary team approach to ensure a successful transition process.

The statement updates three sections relevant to a seamless transition of care:

• Factors unique to vulnerable populations, including the contributions of social determinants of health, psychosocial well-being, and neurocognitive status of the individuals with CHD.

• The additional costs and potential health complications of inadequate transition to adult care, as well as increased use of emergency medical services and the impact on quality of life.

• Considerations and suggestions for designing transition programs that address ways to increase adolescent participation in face-to-face and online communication with health professionals, adopting a family-centered approach and learning from successful program models.

The statement calls on healthcare professionals to gain a broader understanding of the transition needs and barriers to successful transition and help coordinate the integration into adult-centered care for both primary care and specialty care.

The writing group acknowledges that “significant knowledge gaps” remain and calls for future research in several areas, including the ideal timing for transition and identifying barriers to successful transition, especially for underserved populations.

The consequences of poor healthcare transition are “great” and collecting information on outcomes through organized, multifaceted, collaborative approaches to transition is key to improving the lifelong care of individuals with CHD, they say.

“It is important to involve individuals and families in research. Collaboration during this transition is critical to improving the lifelong care of people with congenital heart disease,” John adds in the news release.

This scientific statement was prepared by the volunteer writing group on behalf of the AHA’s 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; the Council on Cardiovascular and Stroke Nursing; the Council on Arteriosclerosis, Thrombosis, and Vascular Biology; and the Stroke Council.

J Am Heart Assoc. Published online March 17, 2022. Abstract

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