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Characteristics of Adults With Congenital Heart Defects
Quick Takes
- The ages of patients in the cohort reflect the growing and aging population of adults with congenital heart defects in the United States.
- Patients with both severe and nonsevere congenital heart defects had high rates of cardiac and noncardiac comorbid conditions.
- There were significant regional differences in types of insurance coverage. Specifically, there was a high rate of Medicaid in Massachusetts due to universal health care coverage.
Study Questions:
What are the demographics, comorbidities, and health care use of adults, ages 20-64 years, in the United States with congenital heart defects (CHDs)?
Methods:
Adults with CHDs were identified at three US sites: Emory University (five counties around Atlanta, GA), Massachusetts Department of Health (statewide), and New York State Department of Health (11 counties). Data were collected based on International Classification of Disease-9th Revision (ICD-9) code diagnoses between January 1, 2008, and December 31, 2010. The 2010 United States Census was used to determine the denominator for the general population during this time. Demographics, insurance type, comorbidities, and encounter data were collected. Patients with isolated atrial septal defect or patent foramen ovale were excluded.
Results:
CHD severity varied across sites, with up to 20% of adults having severe CHD and >50% having ≥1 cardiovascular comorbidity. Insurance type differed across sites, with Massachusetts having a large proportion of Medicaid (75%) and Emory University and New York having large proportions of private insurance (44% and 67%, respectively). There was a wide variability in estimated proportions of adults with CHD-coded health care encounters by location, with 1.2 (Emory University), 10 (Massachusetts), and 0.6 (New York) per 1,000 adults.
Conclusions:
This is the first surveillance effort of adults in the United States with CHD. The study provides a basis for developing further understanding of health care use in adults with CHD.
Perspective:
Because of a lack of an integrated national health care system, as well as a lack of a national disease-based registry for congenital heart disease, studying national trends and characteristics of patients with congenital heart disease in the United States remains a great challenge. This study represents a step towards better understanding of congenital heart disease across the country. The study showed significant regional variability in many of the measures under study. This may have been related to true regional variations, but was also likely related to different characteristics of the testing sites as well as different methods of coding and gathering data. This study will be an important starting point for further surveillance efforts and care provision plans.
Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Prevention, Congenital Heart Disease, CHD and Pediatrics and Arrhythmias, CHD and Pediatrics and Quality Improvement
Keywords: Censuses, Comorbidity, Epidemiology, Foramen Ovale, Patent, Heart Defects, Congenital, Heart Septal Defects, Atrial, Insurance, Health, Medicaid, Public Health Surveillance, Secondary Prevention
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