The new guidelines released by American cardiologists include updates on the role of physicians with specialized experience in guiding the care of adults with congenital heart disease; updates on mental health, physical activity, pregnancy and heart failure; and new recommendations on specific types of heart defects and treatment approaches.

Advances in surgical treatments over the past few decades have contributed to more than 90% of babies born with heart disease surviving well into adulthood. This has led to a rapid increase in the population of adults with congenital heart disease (CHD), who continue to have an increased risk of cardiac complications as they age, despite early interventions

Congenital heart disease encompasses a wide range of conditions, including more than 30 recognized types of heart defects, which can be classified as simple, moderate, or complex. Symptoms or functional differences resulting from these defects include abnormal heart rhythms, decreased exercise capacity, low blood oxygen levels, and signs of heart failure, among others. Many people with congenital heart disease are diagnosed early, and some may undergo surgery in infancy or early childhood, while a smaller proportion of people with milder defects may only learn of their condition in adulthood.

In this regard, the American College of Cardiology (ACC) and the American Heart Association, along with other medical associations, have published new guidelines for the management of congenital heart disease in adults. The guidelines were jointly published in *JACC*, the flagship journal of the American College of Cardiology, and in *Circulation*, the flagship journal of the American Heart Association.

“We’ve made progress in understanding this condition, as we now have more evidence than the last guidelines,” said Dr. Michelle Gurvitz, a cardiologist at Boston Children’s Hospital, associate professor of pediatrics at Harvard Medical School, and chair of the guidelines’ writing committee. “While we’re always looking for more evidence, we’re improving. The field has grown almost exponentially in terms of the amount of data collected and research published.”

Key updates

The new guidelines include updates regarding the role of clinicians with specialist experience in guiding the care of adults with congenital heart disease; updates on mental health, physical activity, pregnancy, and heart failure; and new recommendations on specific types of heart defects and treatment approaches

The authors of the guideline emphasize the importance of access to continuous specialist care for adults with congenital heart disease. Even when congenital heart disease is diagnosed and treated in childhood, many patients stop seeing congenital heart disease specialists by adulthood. Common barriers include a lack of awareness about the importance of continuity of care, the availability of specialists in their area of ​​residence, and socioeconomic or insurance-related difficulties. The new guideline offers recommendations on when specialist expertise is warranted and how specialists can collaborate with other clinicians to expand access to care.

The guide also includes updated recommendations on exercise. Physical activity is essential for a heart-healthy lifestyle for everyone, including people with congenital heart disease. However, patients with congenital heart disease are often concerned about what level of activity is safe.

The writing committee also emphasizes that patients with more complex heart conditions often require close monitoring and may need additional procedures or medical devices in adulthood, such as valve replacements, ablations, or pacemakers to correct arrhythmias (irregular heartbeats), or a heart transplant if heart function deteriorates severely. Further research is needed to determine the optimal timing for such interventions and to inform geriatric care approaches as more patients reach older adulthood.

“We will continue to push the field to answer these questions, as the patient population isn’t going away; it’s growing,” said Dr. Michelle Gurvitz, a cardiologist at Boston Children’s Hospital, associate professor of pediatrics at Harvard Medical School, and chair of the guidelines writing committee. “In particular, our most complex patients are the fastest-growing group, and I hope that some of the gaps we identified will spur people to try to answer those questions about how to most efficiently and effectively provide care to our patients.”