Advances in research, clinical practice and understanding of the long-term needs of adults with congenital heart disease (ACHD) underpin new guidelines that aim to transform care for a rapidly growing adult patient population. The new recommendations, which replace guidance issued in 2018, look to address the most common birth defect in the US, affecting nearly 1% of births, or about 40,000 babies each year. While more than 90% of affected children now survive into adulthood, the population of adults with ACHD is expanding, highlighting new challenges related to long-term complications, access to care and quality of life. More evidence “We have moved the field forward, in that we have more evidence than we did with the last set of guidelines,” said the writing committee, led by its chair Michelle Gurvitz, MD, a cardiologist at Boston Children’s Hospital and professor of pediatrics at Harvard Medical School in Boston. “While we always want more evidence, we are doing better. The growth of the field has been almost exponential in the amount of data being gathered and research being published.” Issued by the American College of Cardiology (ACC), the American Heart Association (AHA) and several partner organizations, the guidelines center on the importance of continuous, specialized care. Many patients stop seeing congenital heart disease specialists after leaving pediatric care, often due to limited access, insurance challenges or lack of awareness. Improving outcomes The new recommendations, which are published in JACC and Circulation, provide clearer recommendations on when adults should be evaluated by ACHD specialists and how expert teams can collaborate with general cardiologists to improve outcomes. “We know we need to be diligent in our efforts to get pediatric patients into adult congenital heart disease care,” said Dr. Gurvitz. “We still have a lot of patients who stop receiving specialized care as they transition and transfer from pediatric to adult care, and a lot of patients who can’t access physicians for other reasons like insurance or geography.” Other updates include a renewed emphasis on mental health, with the committee calling for routine screening and assessment of anxiety, depression and cognitive challenges common in adults with ACHD. Exercise and lifestyle advice Updated advice on exercise now actively encourages physical activity and sports participation following appropriate evaluation, reflecting evidence that exercise can be safe and beneficial. “We renewed our emphasis on mental health and neurocognitive assessment. Our patients have a lot of challenges with anxiety and depression, so it’s important to discuss that with patients or consider sending them for further evaluation,” said Dr. Gurvitz. The writing committee also noted that most patients with ACHD could safely carry a pregnancy with individualized risk assessment and monitoring. “We’ll continue to push the field to answer the questions because the patient population is not going anywhere—it’s only getting larger,” said Dr. Gurvitz. “In particular, our most complex patients are our fastest-growing group, and my hope is that some of the identified gaps will push people to try to answer those questions around what is the most efficient and effective way to deliver care to our patients.” Source: Gurvitz M, Krieger EV, Fuller S, Davis LL, Kittleson MM, et al. 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease. J Am Coll Cardiol. 2025. (Article in Press). Image Credit: MQ-Illustrations – stock.adobe.com