Congenital heart disease (CHD) is the number one birth defect in the United States, and because of the advancement of surgery and technology in the treatment of CHD, more children live into adulthood than ever before. As a result, the population of individuals with CHD is increasing at 5 percent each year.
Currently, adult congenital heart disease (ACHD) patients receive inconsistent care as they are lost to follow-up treatment when transitioning from adolescence to adulthood. These are patients still under the care of pediatric cardiologists who do not have training in the care of adults, and patients under the care of cardiologists who do not have an adequate knowledge of CHD. These inconsistencies put many CHD patients at risk and can result in higher costs.
That’s why Curt Daniels, MD, FACC, a cardiologist in The Heart Center at Nationwide Children’s Hospital and director of the Columbus Ohio Adult Congenital Heart Disease & Pulmonary Hypertension Programs, has been so passionate in petitioning for a joint sub-specialty in ACHD. On June 15, Dr. Daniels and his colleagues, including Michael Landzberg, MD, program director of the Boston Adult Congenital Heart Disease Program, saw their work pay off as the American Board of Internal Medicine voted unanimously for the ACHD sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.
“This is about the future of children born with heart disease, and the future is now as there are currently more adults than children with congenital heart disease,” explained Dr. Daniels, also an associate professor of Internal Medicine and Pediatrics at The Ohio State University College of Medicine. “Each year all of the children we have taken care of for the previous 18 years now have no specialized cardiovascular care, and this has led to the loss of care and poor outcomes.”
This new sub-specialty will provide a comprehensive approach and high quality care for the nearly one million adults living with congenital heart disease that require specialized life-long care.
The ACHD certification is the result of a combined effort between the American College of Cardiology, American Academy of Pediatrics, American Heart Association, International Society of Congenital Heart Disease, and multiple patient advocacy groups. These organizations and a number of medical professionals came together in response to a consensus within the CHD community that the U.S. was facing an issue of how best to care for this rapidly growing patient population.
In early 2009 and led by Dr. Daniels, Nationwide Children’s developed the Transition Program – a patient education program that aims to successfully transition adolescents to continue specialized cardiac care as they become adults. While the ACHD sub-specialty will help to ensure that there are cardiologists trained to care for adults with CHD, the Transition Program will continue to ensure that adolescents with CHD are aware of how to seek necessary care throughout the different stages of their life.