This post was authored by Curt J. Daniels, MD, FACC, a member of the ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Section, and a professor of Internal Medicine & Pediatrics at The Ohio State University and Nationwide Children’s Hospital in Columbus, OH.
Congenital heart disease (CHD) is the most common birth defect occurring in about one in 100 live births. Incredible advancements in the care of children with CHD have led to improved quality of life and survival, and more patients today reach adulthood than ever before. Because of this, the proportion of children vs. adults with CHD has shifted over the last decade and there are now more adults than children living with CHD by a 2/3rd margin. This is fantastic news for the more than 40,000 infants born with CHD each year in the U.S.
However, this is only half of the story. The success of pediatric cardiology and CHD surgery has created new challenges for the medical community, patients and families. The care of the adult CHD (ACHD) population is complicated and complex; not only because of their specific CHD anatomy and physiology, but also from a care model standpoint. ACHD patients fall between pediatric cardiology and adult general cardiology. Historically, training programs did not mandate any specific time dedicated to ACHD patient care, and therefore, cardiologists were ill prepared to understand how to evaluate and care for ACHD patients. Plus, compared to other care models in adult and pediatric cardiology, such as heart failure and electrophysiology programs, nursing and advanced care practitioners were either not developed or supported for ACHD, leading to systematic flaws in who and how patients are cared for within medical centers. Except for a few select areas in the country where ACHD was developed from a programmatic standpoint, most of the 1.5 million patients were lost to specialized CHD care.
The tide has now changed. Over the past decade, the ACC along with many other societies and organizations, developed several initiatives that advocated for and worked toward solving these issues for ACHD patients. In 2007, a petition to the American Board of Internal Medicine (ABIM) and American Board of Pediatrics (ABP) initiated a process, which eventually led to approval in 2012 for ABIM ACHD Board Certification. Qualifying and eligible ACHD cardiologists will be able to take an exam and be certified in ACHD. Initially, most cardiologists who qualify will do so by “grandfathering” into eligibility based upon their current practice and competencies in ACHD. However, this will change over the next several years. Grandfathering will phase out as the Accreditation Council for Graduate Medical Education (ACGME) – the certifying organization for all medical training programs – approved ACHD fellowship training phases in, and by 2021, all who qualify for the certifying exam will do so only after completing a 24-month ACHD fellowship following pediatric or general cardiology. ACGME has created a standardized curriculum with two pathways for the pediatric or general cardiologist. ACHD subspecialty training is consistent with other post-cardiology fellowships in heart failure/transplant, electrophysiology and interventional cardiology, and will generate specialized ACHD cardiologists who then are eligible to be board certified to care for ACHD patients. The first certifying exam for ACHD is Oct. 20, 2015.
Although the ABIM ACHD board certification and ACGME-approved training programs provide a remarkable base for the care of ACHD patients, and provide a clear path for the future, it does not fully address the issue of how we care for patients within a hospital system or medical center. Imaging standards, interventional procedures, inpatient and outpatient care, are a part of the care model that must be developed with a high standard to provide quality care. To this end, the Adult Congenital Heart Association (ACHA) as a patient advocacy society has created an ACHD Program Accreditation process to provide criteria to improve the quality of care delivered in the U.S. A committee of ACHD specialists and patients developed specific criteria under several major categories of care. The process has been endorsed by several health care and patient advocacy societies and cardiovascular organizations including the ACC.
The future is bright for CHD patients as we begin to build a model to provide and deliver high-quality ACHD care. The ACC along with and through the ACPC Section has been a major influence providing leadership and shepherding the initiatives that will lead to improved access to life-long specialized care for all CHD patients.
Visit the Congenital Heart Disease and Pediatric Cardiology Clinical Topic Collection on ACC.org and learn more about the ACC’s ACPC Section here.