Using Capture-Recapture Methodology to Estimate Adolescent and Adult Congenital Heart Defect (CHD) Prevalence in Five Metropolitan Georgia Counties: 2008-2010 Open Access

John, Katherine (2015)

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Purpose: To determine the congenital heart defect (CHD) prevalence in five metropolitan counties (Clayton, Cobb, DeKalb, Fulton, and Gwinnett) in Georgia from 2008-2010 using capture-recapture methodology.

Method: Using data from Children's Hospital of Atlanta (CHOA), Sibley Heart Center Cardiology, Pediatric Cardiology Services (PCS), Grady Health, Emory Healthcare including St. Joseph's Hospital, and Georgia Medicaid claims, capture-recapture (CR) methodology and logistic regression were employed to estimate the prevalence of CHD for both adolescents, aged 11-20, and adults aged 21-64, in five metropolitan Atlanta, Georgia counties. From this, the number of CHD cases that were missed were estimated by these data sources from January 1, 2008 to December 31, 2010.

Results: Altogether 1,858 adolescent cases were captured from at least one "adolescent" database (CHOA, Sibley, PCS, and Medicaid), and 3,183 adult cases were captured from at least one "adult" database (Emory Healthcare, St. Joseph's Hospital, Grady Health, and Medicaid). The estimated number of adolescents (aged 11-20 years) with CHD and living in the 5 metropolitan Atlanta counties in Georgia was 3,718 (95%CI: 3,471 - 4,004) for a prevalence estimate of 7.85 per 1,000 population aged 10-19 in 2010. The number of adults with CHD aged 21-64 years was estimated to be 12,969 (95%CI: 13,873 -18,915) for a prevalence estimate of 6.08 per 1,000 population aged 20-64 in 2010.

Conclusion: Despite the need for lifelong care, adults with CHDs are being lost within the healthcare system. Public health initiatives should focus on the high proportion of adult CHDs retained in adolescent care. Lack of referrals and patient retention in adolescent care provides context for the need of more specialized adult congenital care units and to mandate policies, such as patient referrals, to assist physicians with coordinated transfer of patients to adult care.

Table of Contents

CHAPTER I: Background & Literature Review... 1

Background... 1

Access to Care... 4

Capture-Recapture Methodology... 6

Utility of Capture-Recapture (CR) Method in Public Health... 9

Studies Utilizing Capture-Recapture (CR) Methods to Estimate Prevalence... 13

Limitations for Capture-Recapture (CR) Methodology... 17

CHAPTER II: Manuscript... 23

Introduction... 23

Hypotheses... 24

Methods... 25

Data Sources... 25

Data Collection... 29

Statistical Methods... 30

Results... 37

Discussion... 39



Table 1. Sociodemographics of CHD Patients Captured Between January 1, 2008 and December 31, 2010, Limited to Five Metropolitan Atlanta, Georgia Counties (Clayton, Cobb, DeKalb, Fulton, and Gwinnett)...53

Table 2. Distribution of Age and Gender for Unique Georgia CHD Cases (Ages 11- 64) by Seven Data Sources Limited to Five Counties (Clayton, Cobb, DeKalb, Fulton, and Gwinnett)...54

Table 3. Number of Captures for Unique CHD Cases in the Five Metropolitan Atlanta, Georgia Counties*, 11-64 Years (N=4,797)...55

Table 4. Manual CR Analysis of Both the Adolescent and Adult Populations Using Two-Sources in the Five Metropolitan Atlanta, Georgia Counties1...56

Table 5. Dependency Results between Each Two-Source CR Analysis Conducted on the Adolescents (11-20 years) and Adults (21-64 years) in the Five Metropolitan Atlanta, Georgia Counties1...57

Table 6. CR Analysis Using Poisson Modeling of Three Adolescent Sources to Estimate Missing and Total CHD Cases in Five Metropolitan Atlanta, Georgia Counties1...58

Table 7. CR Analysis Using Poisson Modeling of Four Adult Sources to Estimate Missing and Total CHD Cases in Five Metropolitan Atlanta, Georgia Counties1...59

CHAPTER III: Public Health Implications... 60


Appendix A: Congenital Heart Defects Case Definition... 64

Appendix B: Tabulated Literature Review... 68

Table1. Papers Explaining Capture-Recapture Methodology... 68

Table 2. Papers Utilizing Capture-Recapture Methodology for Health Assessment...69

Appendix C. Example SAS Code of Capture Recapture Using Poisson Modeling... 71

Appendix D. Sensitivity Analysis using MACDP... 72

Table D1. Breakdown of Frequencies of Overlap between Adolescents in the MACDP Registry and Adolescent Data Sources and Adults in the MACDP Registry and Adult Data Sources... 73

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