New guideline on managing congenital heart disease recommends ongoing subspecialty care
The American College of Cardiology and the American Heart Association, in conjunction with other cardiovascular societies, updated a guideline on care for adults who were born with heart defects.
Several cardiovascular societies released an updated guideline on care for adults with congenital heart disease, with new or substantially revised recommendations related to the role of clinicians with specialized expertise, mental health, and physical activity.
The American College of Cardiology and the American Heart Association developed the guideline in collaboration with the Heart Rhythm Society, the International Society for Adult Congenital Heart Disease, and the Society for Cardiovascular Angiography and Interventions. The guideline includes evidence from research published between 2017 and 2024 and replaces the previous guidance issued in 2018. It was jointly published in JACC and Circulation on Dec. 18.
The guideline emphasized the importance of ongoing specialized care for adults with congenital heart disease and stated that common barriers include a lack of awareness about the importance of care continuity, low availability of local specialists, and socioeconomic or insurance-related challenges. The new guideline describes when specialized expertise is needed and how specialists can partner with other clinicians to broaden access to care.
The new guideline also emphasizes mental health and neurocognitive assessment, since some adults with congenital heart disease experience mood disorders as well as cognitive and memory problems. The guideline includes updated recommendations around exercise, as patients with heart defects are often concerned about what level of activity is safe. In addition, the guideline includes new and updated recommendations on birth control options, pregnancy, and childbirth.
Updated guidance on surgical practices and treatments for specific forms of congenital heart disease is also provided. Patients with more complex heart defects often require close monitoring and may need additional procedures or medical devices during adulthood, such as valve replacements, ablations or pacemakers, or a heart transplant, the guideline said. Further research is needed to inform the optimal timing for such interventions, as well as to inform geriatric care approaches as more patients reach older adulthood, the authors noted.
Other recommendations address tetralogy of Fallot, strategies for patients with secundum atrial septal defect and pulmonary arterial hypertension, rhythm versus rate control for atrial arrhythmias, and guideline-directed medical therapy for heart failure in patients with congenital heart disease.