Characteristics of Adults With Congenital Heart Defects in the United States

Abstract

Background: In the United States, >1 million adults are living with congenital heart defects (CHDs), but gaps exist in understanding the health care needs of this growing population.

Objectives: This study assessed the demographics, comorbidities, and health care use of adults ages 20 to 64 years with CHDs.

Methods: Adults with International Classification of Disease-9th Revision-Clinical Modification CHD-coded health care encounters between January 1, 2008 (January 1, 2009 for Massachusetts) and December 31, 2010 were identified from multiple data sources at 3 U.S. sites: Emory University (EU) in Atlanta, Georgia (5 counties), Massachusetts Department of Public Health (statewide), and New York State Department of Health (11 counties). Demographics, insurance type, comorbidities, and encounter data were collected. CHDs were categorized as severe or not severe, excluding cases with isolated atrial septal defect and/or patent foramen ovale.

Results: CHD severity and comorbidities varied across sites, with up to 20% of adults having severe CHD and >50% having ≥1 additional cardiovascular comorbidity. Most adults had ≥1 outpatient encounters (80% EU, 90% Massachusetts, and 53% New York). Insurance type differed across sites, with Massachusetts having a large proportion of Medicaid (75%) and EU and New York having large proportions of private insurance (44% EU, 67% New York). Estimated proportions of adults with CHD-coded health care encounters varied greatly by location, with 1.2 (EU), 10 (Massachusetts), and 0.6 (New York) per 1,000 adults based on 2010 census data.

Conclusions: This was the first surveillance effort of adults with CHD-coded inpatient and outpatient health care encounters in 3 U.S. geographic locations using both administrative and clinical data sources. This information will provide a clearer understanding of health care use in this growing population.

Keywords: adult congenital heart disease; epidemiology; surveillance.

FIGURE 1. Demographics of Adults With CHDs by CHD Severity at 3 U.S. Sites, 2008 to 2010*

Age, sex, and insurance status of adults with congenital heart defects (CHDs) by location and by CHD severity. *2009 to 2010 for Massachusetts. EU = Emory University: Clayton, Cobb, DeKalb, Fulton, and Gwinnett counties, Georgia; MA = Massachusetts: entire state; NY = New York: Allegany, Bronx, Cattaraugus, Chautauqua, Erie, Genesee, Monroe, Niagara, Orleans, Westchester, and Wyoming counties.

FIGURE 2. Selected Encounter Types by CHD Severity at 3 U.S. Sites, 2008 to 2010*

Encounter and procedure types and percentages for adult patients with CHD by location and by CHD severity. *2009 to 2010 for MA. Abbreviations as in Figure 1.

FIGURE 3. Selected Comorbidities by CHD Severity at 3 U.S. Sites, 2008 to 2010*

Cardiovascular and noncardiovascular comorbidities for adult patients with CHD by location and by CHD severity.*2009 to 2010 for Massachusetts. Isolated ICD-9-CM code 745.5 excluded. CNS = central nervous system; CV = cardiovascular; endo = endocrine; GU/GYN = genitourinary/gynecological; immunol = immunologic; rheumat = rheumatologic; thromb = thrombotic; other abbreviations as Figure 1.

CENTRAL ILLUSTRATION. Common Characteristics of Adults With Congenital Heart Disease

Adults with congenital heart disease who access health care have certain characteristics in common, including being middle age, having outpatient encounters, having multiple cardiac and noncardiac comorbidities, and carrying public insurance.