Estimating the prevalence of congenital heart disease among adolescents and adults in Colorado adjusted for incomplete case ascertainment

Am Heart J. 2020 Mar;221:95-105. doi: 10.1016/j.ahj.2019.11.012. Epub 2019 Dec 5.


Background: Congenital heart defects (CHDs), the most common type of birth defect in the United States, are increasing in prevalence in the general population. Though CHD prevalence at birth has been well described in the United States at about 1%, little is known about long-term survival and prevalence of CHDs beyond childhood. This study aimed to estimate the prevalence of CHDs among adolescents and adults in Colorado.

Methods: The prevalence of CHDs among adolescents and adults residing in Colorado during 2011 to 2013 was estimated using log-linear capture-recapture methods to account for incomplete case ascertainment. Five case-finding data sources were used for this analysis including electronic health record data from 4 major health systems and a state-legislated all payer claims database.

Results: Twelve thousand two hundred ninety-three unique individuals with CHDs (2481 adolescents and 9812 adults) were identified in one or more primary data sources. We estimated the crude prevalence of CHDs in adolescents and adults in Colorado to be 3.22 per 1000 individuals (95% CI 3.19-3.53). After accounting for incomplete case ascertainment, the final capture-recapture model yielded an estimated total adolescent and adult CHD population of 23,194 (95% CI 22,419-23,565) and an adjusted prevalence of 6.07 per 1000 individuals (95% CI 5.86-6.16), indicating 47% of the cases in the catchment area were not identified in the case-identifying data sources.

Conclusion: This statewide study yielded new information on the prevalence of CHDs in adolescents and adults. These high prevalence rates underscore the need for additional specialized care facilities for this population with CHDs.

Publication types

  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Adult
  • Colorado / epidemiology
  • Databases, Factual
  • Female
  • Heart Defects, Congenital / epidemiology*
  • Humans
  • Linear Models
  • Male
  • Middle Aged
  • Models, Statistical
  • Prevalence
  • Young Adult