Most children born with congenital heart disease (CHD) in the U.S. today are expected to survive into adulthood. As patient outcomes became more successful over time, the demographics shifted such that adults with CHD began to outnumber pediatric patients. There are currently an estimated 2 million adult congenital heart disease (ACHD) patients living in the U.S., and this population continues to grow at a rate of 5 percent each year. Unfortunately, there remains a huge deficiency of ACHD providers to care for these patients. Many patients instead receive care from providers with little to no training in CHD, or are lost to follow-up entirely.

The field of ACHD is relatively young. The oldest ACHD clinic in the U.S., Massachusetts General Hospital, was formally established in 1976. The number of ACHD clinics has gradually expanded since then but still remains small, with many clinics seeing relatively smaller numbers of patients. The Adult Congenital Heart Association Website maintains a list of self-identified ACHD clinics, and although it is self-reported and unverified data, the website gives a general sense of the state of ACHD care in the U.S. There are currently 113 self-identified ACHD clinics listed, only half of which were established prior to 2010. The median number of patient visits per year is 700 (range 0 – 4,000), which comes out to 13 – 14 outpatient visits per week. This number amounts to less than 10 percent of the current estimated ACHD population and emphasizes the degree to which this population is being underserved.

Of the ACHD providers currently in practice, there are a host of pathways from which they have come.  Many are pure pediatric or adult trained cardiologists with an interest in ACHD care, and have thus gained experience doing it. Others are dual-trained Med-Peds physicians, for whom a specialty in ACHD offered the ability to provide continuity of care over time for patients with chronic illnesses. Some Med-Peds trainees pursue 5-year, combined subspecialty training in pediatric and adult cardiology. More recently, they began to receive dedicated ACHD training at one of a handful of one and two-year ACHD training programs that existed.

In 2015, ACHD training became standardized across the U.S. and the first group of fellows were trained under a dedicated two-year curriculum. At the end of the fellowship, trainees are eligible to take the ACHD certification exam offered by the American Board of Internal Medicine (ABIM). The exam was administered for the first time in 2015 and is offered every other year. There are 22 ACHD fellowship programs listed in the ACC Training Program Directory, of which 11 are currently listed as accredited on the Accreditation Council for Graduate Medical Education (ACGME) website. At this time, a program does not need to be ACGME accredited for a trainee to obtain ABIM certification in ACHD, as long as it is parent pediatric or adult cardiology program is. Per the ABIM website, this will change as of July 1, 2019, and the ACHD program itself will have to be accredited. Depending on program size and funding availability, programs may take one fellow every other year to two fellows annually.

The proposed curriculum for ACHD programs to follow can be found on the ABIM website. In brief, the training consists of 18 months of clinical ACHD care as it takes place among the various disciplines of cardiology, and an additional six months of elective or research time. There are several highlights about ACHD training as it exists now. First, it offers dual training pathways depending on whether the fellow’s background is in pediatric or adult cardiology. For example, a fellow who trained in pediatric cardiology will spend several months of their ACHD training gaining the necessary foundation in adult cardiology rotations (adult echo, cath, etc.). ACHD training has traditionally been heavily undertaken by trainees with a Med-Peds background, and this part of the curriculum helps make it more accessible to trainees with sole pediatric or adult backgrounds. Second, the curriculum allows for the ACHD trainee to gain competency in a subspecialty area within ACHD. One can come out as an ACHD trained physician who is also sufficiently trained and marketable in imaging (including potentially cardiac computed tomography scan or magnetic resonance imaging), electrophysiology, interventional (congenital) cardiology, heart failure or pulmonary hypertension.

Overall, the standardization of ACHD training is a major step in ensuring that the underserved ACHD population receives optimal care.

This article was authored by Jordan Awerbac, MD.