Author + information
- Received September 30, 2019
- Revision received April 27, 2020
- Accepted May 8, 2020
- Published online July 6, 2020.
- Michelle Gurvitz, MD, MSa,∗ (, )@mgurvitzmd,
- Julie E. Dunn, PhDb,
- Ami Bhatt, MDc,
- Wendy M. Book, MDd,
- Jill Glidewell, MSN, MPHe,
- Carol Hogue, PhD, MPHd,
- Angela E. Lin, MDf,
- George Lui, MDg,
- Claire McGarry, MPHh,
- Cheryl Raskind-Hood, MS, MPHd,
- Alissa Van Zutphen, PhDh,i,
- Ali Zaidi, MDj,
- Kathy Jenkins, MD, MPHa and
- Tiffany Riehle-Colarusso, MD, MPHe
- aDepartment of Cardiology, Boston Children’s Hospital, Boston, Massachusetts
- bMassachusetts Department of Public Health, Boston, Massachusetts
- cDepartment of Cardiology, Massachusetts General Hospital, Boston, Massachusetts
- dDepartment of Cardiology, Emory University, Atlanta, Georgia
- eCenters for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia
- fMedical Genetics, MassGeneral Hospital for Children, Boston, Massachusetts
- gDepartment of Medicine, Stanford University School of Medicine, Stanford, California
- hNew York State Department of Health, Albany, New York
- iDepartment of Epidemiology, University at Albany School of Public Health, Rensselaer, New York
- jDepartment of Medicine, Albert Einstein College of Medicine, Bronx, New York
- ↵∗Address for correspondence:
Dr. Michelle Gurvitz, Department of Cardiology, Boston Children’s Hospital, 300 Longwood Avenue, Boston, Massachusetts 02115.
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.
This study was supported by the Centers for Disease Control and Prevention (Grant/Award Number: CDC-RFA-DD12-1207). The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The authors have reported that they have no relationships relevant to the contents of this paper to disclose. Rose Tompkins, MD, served as Guest Associate Editor for this paper. P.K. Shah, MD, served as Guest Editor-in-Chief for this paper.
The authors attest they are in compliance with human studies committees and animal welfare regulations of the authors’ institutions and Food and Drug Administration guidelines, including patient consent where appropriate. For more information, visit the JACC author instructions page.
- Received September 30, 2019.
- Revision received April 27, 2020.
- Accepted May 8, 2020.
- 2020 American College of Cardiology Foundation
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