Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five US surveillance sites, 2011-2013

• Authors: Cheryl Raskind-Hood, Emory University; Jill M Glidewell, Centers for Disease Control and Prevention; Sherry L Farr, Centers for Disease Control and Prevention; Wendy Book, Emory University; Lorenzo Botto, University of Utah; Jennifer S Li, Duke University; Aida S Soim, New York State Department of Health; Karrie F Downing, Centers for Disease Control and Prevention, Atlanta; Tiffany Riehle-Colarusso, Centers for Disease Control and Prevention, Atlanta; Alfred A D'Ottavio, Duke University; Marcia L Feldkamp, University of Utah; Amber D Khanna, University of Colorado, Aurora; Kristin M Sommerhalter, New York State Department of Health; Tessa L Crume, University of Colorado, Aurora
• Journal Title: AMERICAN HEART JOURNAL
• Volume: Volume 238
• Publisher: MOSBY-ELSEVIER | 2021-06-09, Pages 100-108
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1016/j.ahj.2021.04.007
• Subjects: Health Sciences, Epidemiology; Health Sciences, Public Health
• Keywords: Science & Technology; Life Sciences & Biomedicine; Cardiac & Cardiovascular Systems; Cardiovascular System & Cardiology; UNITED-STATES; GENERAL-POPULATION; DISEASE PATIENTS; PREVALENCE; ADULTS; ACHD

Abstract

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.