ACC/AHA guidelines shed light on managing lifetime care for adult CHD

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NEW ORLEANS—To assist cardiologists in making everyday clinical decisions for the challenging group of patients with adult congenital heart disease (CHD)—and in knowing when to refer patients to specialists with expertise in CHD—the American College of Cardiology (ACC) and the American Heart Association (AHA) have jointly released a set of practice guidelines on the management of adults with congenital heart disease during the American Heart Association (AHA) Scientific Sessions.

The guidelines—the first of their kind in the U.S.—will appear in the Dec. 2 issues of the Journal of the American College of Cardiology and Circulation. They are now available online at both of their respective websites (;

Over the years, cardiac surgeons and interventional cardiologists have become highly skilled at repairing heart defects. However, that doesn't mean that all children who have undergone surgical procedures are completely cured, according to the associations. “That's a common misconception," said Carole A. Warnes, MD, co-chair of the guidelines writing committee, director of the adult CHD clinic at Mayo Clinic in Rochester, Minn. "Some patients leave their pediatric cardiologist and think they don't need to see a physician anymore, and others are seen by a cardiologist with no training in congenital heart disease. We really need to focus on how to better care for this population."

In reality, nearly all patients need follow-up throughout adult life. Some will eventually need additional surgery to correct complications that arise over time, according to the guideline’s authors. 

The guidelines provide information on the clinical features, diagnosis and medical, surgical and interventional therapy for congenital heart defects. They also point out common problems and pitfalls, highlight issues to look for during follow-up and make recommendations on genetic testing, pregnancy, contraception and physical activity.

In addition, the guidelines call for:

  • Coordination of the ongoing care of patients through regional centers of excellence with expertise in adult congenital heart disease;
  • Individual and family counseling, including the early education of children;
  • A formal transition process to help teenagers and young adults cross the bridge from their pediatric cardiologist to an adult cardiologist;
  • Outreach and education programs to bring patients back into the healthcare system if they are no longer receiving appropriate care and follow-up;
  • Education about the risks of infection of the inner lining of the heart or the heart valves posed by dental procedures, tattoos, body piercings and other procedures that may introduce bacteria into the bloodstream;
  • Thorough evaluation of patients before non-cardiac surgery or any procedure requiring anesthesia or sedation, coordinated through a regional center of excellence;
  • Counseling about safe contraception; and
  • Consultation before pregnancy, including genetic counseling.

The guidelines were developed in collaboration with the American Society of Echocardiography (HRS), Canadian Cardiovascular Society (CCS), Heart Rhythm Society (HRS), the International Society for Adult Congenital Cardiac Disease (ISACHD), Society for Cardiovascular Angiography and Interventions (SCAI) and Society of Thoracic Surgeons (STS).