Utility of Capture-Recapture Methodology to Estimate Prevalence of Congenital Heart Defects Among Adolescents in 11 New York State Counties: 2008 to 2010

Birth Defects Res. 2017 Nov 1;109(18):1423-1429. doi: 10.1002/bdr2.1099. Epub 2017 Aug 12.


Background: Congenital heart defects (CHDs) are the most common birth defects in the United States, and the population of individuals living with CHDs is growing. Though CHD prevalence in infancy has been well characterized, better prevalence estimates among children and adolescents in the United States are still needed.

Methods: We used capture-recapture methods to estimate CHD prevalence among adolescents residing in 11 New York counties. The three data sources used for analysis included Statewide Planning and Research Cooperative System (SPARCS) hospital inpatient records, SPARCS outpatient records, and medical records provided by seven pediatric congenital cardiac clinics from 2008 to 2010. Bayesian log-linear models were fit using the R package Conting to account for dataset dependencies and heterogeneous catchability.

Results: A total of 2537 adolescent CHD cases were captured in our three data sources. Forty-four cases were identified in all data sources, 283 cases were identified in two of three data sources, and 2210 cases were identified in a single data source. The final model yielded an estimated total adolescent CHD population of 3845, indicating that 66% of the cases in the catchment area were identified in the case-identifying data sources. Based on 2010 Census estimates, we estimated adolescent CHD prevalence as 6.4 CHD cases per 1000 adolescents (95% confidence interval: 6.2-6.6).

Conclusion: We used capture-recapture methodology with a population-based surveillance system in New York to estimate CHD prevalence among adolescents. Future research incorporating additional data sources may improve prevalence estimates in this population. Birth Defects Research 109:1423-1429, 2017.© 2017 Wiley Periodicals, Inc.

Keywords: Bayesian modeling for capture-recapture; R package Conting; adolescent congenital heart defects prevalence; capture-recapture.

MeSH terms

  • Adolescent
  • Bayes Theorem
  • Child
  • Female
  • Heart Defects, Congenital / diagnosis
  • Heart Defects, Congenital / epidemiology*
  • Hospital Records
  • Humans
  • Male
  • Medical Records
  • New York
  • Organizations
  • Population Surveillance / methods*
  • Prevalence
  • Registries
  • United States
  • Young Adult