Estimates of adolescent and adult congenital heart defect prevalence in metropolitan Atlanta, 2010, using capture–recapture applied to administrative records

Abstract Purpose Although congenital heart defects (CHD) are one of the most common types of birth defects in the United States, subnational prevalence estimates beyond early childhood are limited. Methods We used capture–recapture methodology and logistic regression to estimate CHD prevalence per 1000 residents as of January 1, 2010, separately for adolescents and adults treated and living within five metropolitan Atlanta, Georgia counties, during 2008–2010. Results Data sources differed by age. Adolescents ( n  = 1621, aged 11–20 years) and adults ( n  = 3176, aged 21–64 years) were captured from at least one source. We estimated CHD prevalence to be 7.85 per 1000 adolescents (estimated n  = 3718 [95% CI: 3471–4004]) and 6.08 per 1000 adults (estimated n  = 12,969 [95% CI: 13,873–18,915]). When we included persons found in age-inappropriate sources, prevalence estimates increased to 11 per 1000 adolescents and 6.5 per 1000 adults. Conclusions This method for obtaining subnational prevalence estimates provided reasonable prevalence results and identified needs for service improvement. Only one half of adolescents and one-quarter of adults with CHD were in health care within a 3-year time frame, suggesting need for better access to health insurance, transition care, and an increased number of physicians specializing in CHD care.