ACC Corner | Closing the Gaps in Care Among ACHD Patients

Congenital Heart Disease (CHD) is the No. 1 birth defect in the U.S., affecting nearly 40,000 of the nearly 4 million live births each year (J Am Coll Cardiol 2002;39[12]:1890-1900). Thanks to improved care, more children with CHD are living into adulthood, with the number of adult CHD (ACHD) patients having now surpassed the number of pediatric patients and expected to exceed 1 million. 

The increasing number of ACHD patients requiring lifelong specialized care due to their complex anatomic and physiologic outcomes poses new challenges for cardiovascular professionals. According to results from the HEART-ACHD Trial, gaps in cardiology care for ACHD patients are common, particularly in patients who are around 19 years of age and transitioning to adult services (J Am Coll Cardiol 2013;61[21]:2180–2184).

In an effort to better understand the challenges and opportunities associated with caring for CHD patients, the American College of Cardiology (ACC) conducted a survey of its members late last year that addressed topics ranging from referral practices to desired tools and educational programs for the cardiovascular team. The results found that while two out of three clinicians say they transfer their pediatric patients to an ACHD specialist, nearly half of the survey respondents (48 percent) felt the CHD community does a below average or poor job transferring patients to an appropriate ACHD setting.

When it comes to talking to patients about their need for lifelong care, nearly 40 percent of survey respondents said the CHD community does a below average or poor job educating patients. Many of the respondents noted that they make efforts to discuss the need for lifelong care with their patients, but lack of time is a primary barrier to these discussions.

Survey respondents stressed a clear need for patient tools that reinforce the importance of lifelong specialized congenital cardiac care; family planning/pregnancy issues; and basic educational material to aid in better understanding of CHD. Additionally, two-thirds of clinicians would be interested in an ACC-sponsored program that supports CHD patients by providing a series of web-based, age-appropriate education modules that offer guidance on care and life-stage transitions.

On the clinician front, about two out of three respondents indicated that publications about the transition/transfer from pediatric to adult care would be helpful, while nearly half of respondents said they would be interested in Continuing Medical Education/Continuing Education webinars and/or special programming at the ACC’s Annual Scientific Session. 

When asked about currently available tools, 25 percent of respondents were not aware of any tools, including the Adult Congenital Heart Association (ACHA)/International Society for ACHD clinic directory, ACHA personal health passport and others. Similarly, a separate ACC survey of a panel of cardiologists found that slightly more than half (57 percent) of cardiologists “sometimes” access the ACHD clinical guidelines, while one out of four “never” access the ACHD guidelines.

The survey highlights a number of opportunities for the ACC and its partners to not only raise awareness about existing patient and clinician tools and educational forums, but also create new programs and tools aimed at educating the broader medical community. This is even more important now that the American Board of Medical Specialties (through the American Board of Internal Medicine and American Board of Pediatrics) has created a new ACHD cardiovascular subspecialty board certification. Establishing a nationally recognized training pathway and a certification will ensure ACHD patients seeking specialized ACHD care will be able to seek out care from a specialty-trained cardiologist.

Closing the gaps in care for ACHD patients is a main focus of the ACC’s Adult Congenital Pediatric Cardiology (ACPC) Council and Membership Section. The section will use the results of the survey to help inform work with ACC chapters across the country and the ACHA patient advocacy group on education and advocacy efforts, as well as through programs aimed at educating general cardiologists like the Provider Action for Treatment of Congenital Heart disease program.

Dr. Daniels is co-chair of the ACC’s Adult Congenital and Pediatric Cardiology/Adult Congenital Heart Disease Work Group.