Study Shows Gaps in Care Among ACHD Patients

Gaps in cardiology care for adult congenital heart disease (ACHD) are common, and first occur in patients who are around 19 years of age who are transitioning to adult services, according to a study published on March 26 in the Journal of the American College of Cardiology.

The study found that these gaps are more common among patients with mild and moderate diagnoses, and at particular geographical locations. The multicenter, prospective cross-sectional study looked at 922 patients who were 18 years or older with congenital heart disease (CHD) among 12 ACHD centers. A gap in cardiology longer than three years was identified in 42 percent of patients, with 8 percent having gaps longer than a decade. The average age at the first gap in care occurred during the period of transitioning into young adulthood (mean 19.9±9.1, median 19 years).

Further, complexity of CHD was associated with gaps in care, with 59 percent of mild, 42 percent of moderate, and 26 percent of severe disease subjects reporting gaps (p<0.0001). Clinic location was a also a significant predictor of gaps in care, and the study showed that in Colorado, Oregon and Washington State, over 50 percent of patients reported experiencing gaps in care. "This finding deserves further investigation as it suggests there may be geographic barriers to achieving optimal ACHD care and outcomes," the authors note.

Additional Resources

The authors suggest "greater engagement and education, coupled with improved awareness of and access to available resources, for referring internists, family practitioners, primary care physicians and both internal medicine and pediatric cardiologists … this strategy is aligned with the current ACC/ Adult Congenital Heart Association national PATCH (Provider Action for Treating Congenital Hearts) programming, currently targeting similar goals or internal medicine and pediatric cardiologists," they add.

The authors conclude that their results "provide a foundation for further study and for consideration of public health strategies to decrease barriers to, as well as gaps in, cardiology care for the ACHD population."

"This study points out major gaps in care for ACHD patients, who often require life-long care," 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. "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. Through the PATCH program, and other ACC initiatives, experts from the ACC's ACPC membership section have been working to increase awareness and address strategies to improve transition of care.”

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease, CHD & Pediatrics and Quality Improvement

Keywords: Public Health, Heart Defects, Congenital, Cross-Sectional Studies, Cardiology, Physicians, Primary Care, Disease Management, Awareness, United States


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