Congenital Heart Disease (CHD) is the number one birth defect in the U.S., affecting nearly 40,000 of the nearly 4 million live births each year1. Thanks to advances in treatment in care, more and more children with CHD are living into adulthood, and the number of adult CHD patients has now surpassed the number of pediatric patients and is expected to exceed one million.

Most Valuable Tools to Support CHD PatientsThe increasing number of adult CHD patients requiring life-long specialized care due to their complex anatomic and physiologic outcomes poses new challenges for cardiovascular professionals. According to results from the HEART-ACHD Trial published in the Journal of the American College of Cardiology, gaps in cardiology care for adult CHD patients are common, particularly in patients who are around 19 years of age and transitioning to adult services.2

In an effort to better understand the challenges and opportunities associated with caring for CHD patients, in recent months CardioSurve research has explored topics ranging from referral practices to desired tools and educational programs for the cardiovascular team.

The results uncovered that while two out of three congenital specialists said they transfer their pediatric patients to an adult CHD specialist, nearly half (48%) indicated that the CHD community does a below average or poor job transferring patients to an appropriate adult CHD setting.

In terms of talking to patients about their need for lifelong care and the importance of communicating with their health care providers about their current medications, doses and side effects, and medical history, nearly 40% of survey respondents said the CHD community does a below average or poor job educating patients about the need for long-term care. 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.

Clinicians specializing in congenital care stressed a clear need for patient tools that reinforce the importance of lifelong specialized congenital cardiac care (69%), family planning/pregnancy issues (66%), basic educational material to improve their patient’s understanding of CHD (65%), and a checklist for patients transitioning (51%). 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 provide guidance on care and life-stage transitions.

Likelihood to Utilize ACC CHD ToolsAdditionally, approximately two out of three congenital specialists 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 CME/CE webinars and/or special programming at the ACC’s Annual Scientific Session.

In terms of the tools currently available for clinicians, 25% of respondents were not aware of any tools, including the Adult Congenital Heart Association (ACHA)/International Society for Adult Congenital Heart Disease (ISACHD) ACHD clinic directory, ACHA personal health passport, and others. Additionally, a separate CardioSurve survey found that slightly more than half (57%) of cardiologists are “sometimes” accessing the ACHD clinical guidelines, while 1 out of 4 are “never” accessing the ACHD guidelines.

This research 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 to create new programs and resources aimed at educating the broader medical community. This is even more important now that the American Board of Medical Specialties (ABMS) has created a new adult CHD cardiovascular subspecialty.

“Establishing a nationally recognized training pathway and a certification will ensure adult CHD patients seeking adult CHD care will be able to seek out care from a specialty trained cardiologist,” said Kathy Jenkins, MD, MPH, FACC, chair of the ACPC Council and Section 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 ACPC council and membership section will use the results of the survey to help inform their 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 (PATCH) program.

“As the number of CHD children surviving into adulthood has increased over the past four decades, these gaps will continue and likely increase if we don’t work together to address these gaps,” said Gerard R. Martin, MD, FACC, senior vice president of Children’s National Medical Center, and immediate past chair of the ACC’s Adult Congenital Pediatric Cardiology (ACPC) Council.


  1. Hoffman JL, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890-1900.
  2. Gurvitz M, Valente A, Broberg C, et al. Prevalence and Predictors of Gaps in Care Among Adult Congenital Heart Disease Patients : HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol. 2013;61(21):2180–2184.