CHD Information and Resources

Click here to learn more about the Adult Congenital and Pediatric Cardiology (ACPC) Council and Section of the American College of Cardiology! The article by Drs. William A. Zoghbi and Kathy Jenkins provides more information on topics such as ACPC priorities, efforts to establish a subspecialty certification in ACHD, and the PATCH Program.

Study Looks at Adult Congenital Heart Disease Prevalence and Gaps in Care

Results of a survey of general adult cardiologists published on Feb. 6 in the Journal of the American College of Cardiology looked at the prevalence of general adult cardiologists who care for adult patients with congenital heart disease (ACHD), and identified patterns of consulting with ACHD specialists, and awareness of ACHD national clinical guidelines.

ACHD Care Guidelines

Since most internal medicine trained cardiologists did not receive detailed or specific training in CHD, the anatomy, physiology, surgical repairs and expected findings of such disease are not familiar. As such, expert guidelines state that at least half the adult CHD (ACHD) population should receive lifelong monitoring in collaboration with specifically‐trained ACHD specialists.

The ACC/AHA Guidelines state that all ACHD patients should be seen once at an ACHD center once to confirm diagnosis. The document also includes defect-by-defect guidelines. For a PDF of the Guidelines, click here.

The American College of Cardiology is launching CardioCompass™ — a search engine optimization tool to use at the point of care with patients.  CardioCompass™ allows natural language queries to search clinical documents, including cardiovascular guidelines and consensus documents and takes you to the exact section of the guideline that answers your clinical question. You can find the guidelines by searching for “ACHD Heart Center Recommendations.”

You can also check out ACC Guidelines from your mobile device at www.cardiocompass.mobi

The Bethesda Report states that all adults born with complex congenital heart defects should be seen at specialized ACHD care centers. It also outlines the many unmet health care needs facing the ACHD community. For a PDF of the Report, click here.

Congenital Heart Defects

CHD is the most common birth defect (1 out of 120 babies are born with a congenital heart disease) and survival to adulthood, even the most complex of CHD, is now generally the rule.

For the first time in history there are more adults than children living with CHD.

Patients often perceive themselves as “fixed”, and most are not aware of the risks of new problems as they age. Several studies report that up to 50% of families stop seeking cardiac care for their children by age 13, and less than 10% of adults currently receive recommended special care.

Today more than 90% of children receive successful congenital heart defect treatment and live to adulthood - approximately two million adults and children in the U.S. now living with repaired and unrepaired congenital heart defects, most with significant morbidity and early mortality.

For more information about congenital heart defects, please see ACHA’s CHD Fact Sheet or the Congenital Heart Public Heart Consortium’s CHD Fact Sheet.

Resources For Patients