New ACC/AHA Guidelines Aim to Transform Care for Adults Born With Heart Defects

The American College of Cardiology and American Heart Association have released new guidelines for managing congenital heart disease in adults, focusing on mental health, exercise, pregnancy, and lifelong access to specialised care.

Adults born with congenital heart defects now have updated, clearer care recommendations, thanks to a major new guideline released by the American College of Cardiology (ACC) and the American Heart Association (AHA). Published in JACC and Circulation, the guideline reflects the latest scientific evidence gathered between 2017 and 2024, replacing the previous edition issued in 2018.

Congenital heart disease (CHD)—a structural defect present at birth—is the most common birth abnormality in the U.S., affecting about 40,000 newborns each year. Due to advances in pediatric cardiac surgery, more than 90% of these children now survive into adulthood. This has created a rapidly growing population known as Adults with Congenital Heart Disease (ACHD), who often face lifelong risks such as arrhythmias, heart failure, and reduced exercise capacity.

Why the Update Matters

Dr Michelle Gurvitz, chair of the guideline writing committee, said the field has seen “an exponential increase in research,” enabling stronger, evidence-based recommendations. The new guidance expands on topics such as mental health, physical activity, pregnancy, childbirth, heart failure care, and the role of specialised ACHD clinicians.

Lifelong Care Is Essential — But Often Missing

One of the biggest challenges highlighted is the sharp decline in follow-up care once children with heart defects reach adulthood. Many stop seeing CHD specialists due to a lack of awareness, availability, insurance limitations, or geographical barriers.

“We still have a lot of patients who stop receiving specialised care as they transition from pediatric to adult services,” Dr Gurvitz said, urging efforts to keep patients connected with trained ACHD cardiologists.

Mental Health, Exercise & Pregnancy: Key Focus Areas

The guideline places new emphasis on mental well-being, noting that anxiety, depression, and memory problems are common among adults with CHD.

Physical activity recommendations have also been clarified. After proper evaluation, adults with CHD are encouraged—not restricted—to engage in sports and regular exercise.

For individuals considering pregnancy, the guideline stresses the importance of preconception counselling with ACHD specialists to understand genetic risks, maternal safety, fetal outcomes, and delivery planning. With appropriate care, most women with ACHD can safely carry a pregnancy to term.

Advanced Treatment & Future Needs

The document also updates surgical practices and heart failure management, especially for patients with complex defects who may require valve procedures, pacemakers, ablations, or even heart transplantation later in life. More research is needed to guide timing and long-term management as the ACHD population continues to grow.

Dr Gurvitz said, “Our most complex patients are our fastest-growing group, and we must continue building the evidence to deliver care effectively.”

The guideline was developed with support and endorsement from major global heart associations, ensuring broad clinical adoption.