Surveillance of Congenital Heart Defects among Adolescents at Three U.S. Sites

George K. Lui, Claire McGarry, Ami Bhatt, Wendy Book, Tiffany J. Riehle-Colarusso, Julie E. Dunn, Jill Glidewell, Michelle Gurvitz, Trenton Hoffman, Carol J. Hogue, Daphne Hsu, Stan Obenhaus, Cheryl Raskind-Hood, Fred H. Rodriguez, Ali Zaidi, Alissa R. Van Zutphen

Research output: Contribution to journalArticlepeer-review

13 Scopus citations


The prevalence, co-morbidities, and healthcare utilization in adolescents with congenital heart defects (CHDs)is not well understood. Adolescents (11 to 19 years old)with a healthcare encounter between January 1, 2008 (January 1, 2009 for MA)and December 31, 2010 with a CHD diagnosis code were identified from multiple administrative data sources compiled at 3 US sites: Emory University, Atlanta, Georgia (EU); Massachusetts Department of Public Health (MA); and New York State Department of Health (NY). The estimated prevalence for any CHD was 4.77 (EU), 17.29 (MA), and 4.22 (NY)and for severe CHDs was 1.34 (EU), 3.04 (MA), and 0.88 (NY)per 1,000 adolescents. Private or commercial insurance was the most common insurance type for EU and NY, and Medicaid for MA. Inpatient encounters were more frequent in severe CHDs. Cardiac co-morbidities included rhythm and conduction disorders at 20% (EU), 46% (MA), and 9% (NY)as well as heart failure at 3% (EU), 15% (MA), and 2% (NY). Leading noncardiac co-morbidities were respiratory/pulmonary (22% EU, 34% MA, 16% NY), infectious disease (17% EU, 22% MA, 20% NY), non-CHD birth defects (12% EU, 23% MA, 14% NY), gastrointestinal (10% EU, 28% MA, 13% NY), musculoskeletal (10% EU, 32% MA, 11% NY), and mental health (9% EU, 30% MA, 11% NY). In conclusion, this study used a novel approach of uniform CHD definition and variable selection across administrative data sources in 3 sites for the first population-based CHD surveillance of adolescents in the United States. High resource utilization and co-morbidities illustrate ongoing significant burden of disease in this vulnerable population.

Original languageEnglish (US)
Pages (from-to)137-143
Number of pages7
JournalAmerican Journal of Cardiology
Issue number1
StatePublished - Jul 1 2019

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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