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.

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The study, conducted on behalf of the ACC, the College's Adult Congenital Heart Disease Working Group, and the independent Adult Congenital Cardiac Care Associate Research Network, looked at 219 U.S. ACC members who were general adult cardiologists without ACHD specialization or pediatric cardiology certification.

The majority of respondents (95.4 percent) stated they treat patients with ACHD, and 83.5 percent stated they had at least one patient with moderate disease, while 45.2 percent had at least one patient with complex disease in their practices.

More than half of respondents (61.5 percent) noted that they had access to an ACHD specialist for consultation, and the 2008 ACC/American Heart Association Guidelines for the Management of Adults with Congenital Heart Disease (CHD) were used by the majority of respondents (79.5 percent). However, nearly all respondents (99.0 percent) noted that they would like additional information regarding care for ACHD patients and noted continuing medical educational programs (56.1 percent), web-based resources (54.6 percent), and "grand rounds"-type lectures (35.1 percent) were the desired channels.

A lack of access to ACHD specialists appears to be a significant gap in care, as 38.5 percent of respondents reported not having access. "The slow evolution of ACHD care programs and board specialty certification of ACHD providers has likely contributed to a perceived lack of access," the authors note.  
The authors add that "despite awareness and use of national ACHD care guidelines," many general cardiologists providing care to ACHD patients "do not seek ACHD subspecialty consultation."
Further, "general adult cardiologist, together with pediatric cardiologists, primary care providers, and ACHD care subspecialties need to be considered integral members of coordinated ACHD care teams," the authors note. "Ensuring that all ACHD care team members have ready access to ACHD education and consultation appears both prudent an imperative to optimize quality outcomes and to extend innovative congenital cardiac care to adult survivors of CHD."
Gerard Martin, MD, FACC, co-author of the study and member of the ACC's Adult Congenital and Pediatric Cardiology (ACPC) council, notes, "this study shows us there are opportunities for improvement of care for ACHD patients, and as the number of ACHD patients is only increasing, it is important to address these gaps."
Moving forward, the ACC's ACPC membership section is working with ACC's Chapters and the patient advocacy group, the Adult Congenital Heart Association, to educate general cardiologists through the Provider Action for Treatment of Congenital Heart disease (PATCH) program. The PATCH program also focuses on developing networking programs between ACHD subspecialty cardiologists and general cardiologists through grand rounds, visits to ACHD clinics, and more. In addition, webinars on various aspects of ACHD care are available for ACC's members.

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease

Keywords: Survivors, Heart Diseases, Prevalence, Heart Defects, Congenital, Cardiology, Primary Health Care, Awareness, United States

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