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Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five U.S. surveillance sites, 2011-2013 - 19/06/21

Doi : 10.1016/j.ahj.2021.04.007 
M. Jill Glidewell, MSN, MPH a, , Sherry L. Farr, PhD a, Wendy M. Book, MD b, Lorenzo Botto, MD c, Jennifer S. Li, MD, MHS d, Aida S. Soim, PhD, MD e, Karrie F. Downing, MPH a, Tiffany Riehle-Colarusso, MD, MPH f, Alfred A D'Ottavio, BSE, BEE d, Marcia L. Feldkamp, PhD c, Amber D. Khanna, MS, MD g, Cheryl L. Raskind-Hood, MS, MPH b, Kristin M. Sommerhalter, PhD e, Tessa L Crume, MS, PhD h
a Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA 
b Emory University School of Medicine and Rollins School of Public Health, Atlanta, GA 
c University of Utah, Salt Lake City, UT 
d Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC 
e New York State Department of Health, Albany, NY 
f Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Atlanta, GA 
g Departments of Internal Medicine and Pediatrics, Divisions of Cardiology, University of Colorado Anschutz Medical Campus, Aurora, CO 
h Department of Epidemiology, Colorado School of Public Health, University of Colorado | Anschutz Medical Campus, Aurora, CO 

Reprint requests: Jill Glidewell, MSN, MPH, Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, 4770 Buford Hwy, MS S-106-3, Atlanta, GA 30341.Centers for Disease Control and PreventionNational Center on Birth Defects and Developmental Disabilities4770 Buford Hwy, MS S-106-3AtlantaGA30341.

Résumé

Background

Many individuals born with congenital heart defects (CHD) survive to adulthood. However, population estimates of CHD beyond early childhood are limited in the U.S.

Objectives

To estimate the percentage of individuals aged 1-to-64 years at five U.S. sites with CHD documented at a healthcare encounter during a three-year period and describe their characteristics.

Methods

Sites conducted population-based surveillance of CHD among 1 to 10-year-olds (three sites) and 11 to 64-year-olds (all five sites) by linking healthcare data. Eligible cases resided in the population catchment areas and had one or more healthcare encounters during the surveillance period (January 1, 2011-December 31, 2013) with a CHD-related ICD-9-CM code. Site-specific population census estimates from the same age groups and time period were used to assess percentage of individuals in the catchment area with a CHD-related ICD-9-CM code documented at a healthcare encounter (hereafter referred to as CHD cases). Severe and non-severe CHD were based on an established mutually exclusive anatomic hierarchy.

Results

Among 42,646 CHD cases, 23.7% had severe CHD and 51.5% were male. Percentage of CHD cases among 1 to 10-year-olds, was 6.36/1,000 (range: 4.33-9.96/1,000) but varied by CHD severity [severe: 1.56/1,000 (range: 1.04-2.64/1,000); non-severe: 4.80/1,000 (range: 3.28-7.32/1,000)]. Percentage of cases across all sites in 11 to 64-year-olds was 1.47/1,000 (range: 1.02-2.18/1,000) and varied by CHD severity [severe: 0.34/1,000 (range: 0.26-0.49/1,000); non-severe: 1.13/1,000 (range: 0.76-1.69/1,000)]. Percentage of CHD cases decreased with age until 20 to 44 years and, for non-severe CHD only, increased slightly for ages 45 to 64 years.

Conclusion

CHD cases varied by site, CHD severity, and age. These findings will inform planning for the needs of this growing population.

Le texte complet de cet article est disponible en PDF.

Abbreviations : ASD, CHD, ICD-9-CM, PFO, CO, GA, NC, NY, UT


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