Loss to Follow-up in Patients with Congenital Heart Defects: Failed Transition from Pediatric to Adult Care or a Retention Issue in Adolescence? Open Access

Abstract

Purpose: To determine 1) how many Georgia adolescents with a Congenital Heart Defect (CHD) received continuous care from 2008-2010; 2) how many of them successfully transitioned into adult congenital care; and 3) a predictive model of risk factors for loss to follow-up and successful transition.

Method: Data from an ongoing pilot CHD surveillance project were used to identify a cohort of adolescent patients, 16-21 years old seen at Sibley Heart Center, Pediatric Cardiology Services (PCS), or Children's Healthcare of Atlanta (CHOA) during 2008 or 2009. Evidence of transitioning into adult care was searched for in Emory Healthcare, St. Joseph's Hospital, Grady Health, or Georgia Medicaid data during 2008-2010. Odds ratios were calculated using multivariable logistic regression.

Results: After controlling for age, sex, insurance, proximity, CHD severity, number of procedures, and comorbidities,more than half (53.6%) of the adolescents were lost to follow-up and only about 20% successfully transitioned into adult congenital care. Being older and female predicted loss to follow-up, while severity, procedure history and having a comorbidity were protective. Being older, and having public insurance, a severe CHD, a non-CHD birth defect, and a respiratory/pulmonary comorbidity predicted successful transitioning.

Conclusion: As adolescent patients age, follow-up care and proper transitioning into an adult congenital heart defect practice must be reinforced. Implementing a national CHD surveillance program and continuing research on the factors affecting loss to follow-up and successful transitioning can help increase specialized healthcare utilization for those living with a CHD.

Table of Contents

Distribution Agreement i

Approval Sheet ii

Abstract Cover Page iii

Abstract iv

Cover Page v

Acknowledgments vi

Table of Contents vii

List of Abbreviations viii

CHAPTER 1

Congenital Heart Defects 1

Follow-up Care 3

Transition 5

Loss to Follow-up 7

Risk Factors / Predictors for Loss to Follow-up 8

Protective Factors for Loss to Follow-up / Returning to Care 9

CHAPTER II 11

Introduction 11

Hypotheses 13

Methods 13

Results 18

Discussion 22

Strengths and Limitations 24

References 25

Tables 34

Figures 39

CHAPTER III 41

Appendices 45

Appendix A 45

Appendix B 48

Appendix C 53

Appendix D 55

About this Master's Thesis

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School	Rollins School of Public Health
Department	Epidemiology
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Keyword	Adolescent Congenital Heart Defect Lost to Follow-Up Transition
Committee Chair / Thesis Advisor	Hogue, Carol J, Emory University
Committee Members	Raskind-Hood, Cheryl, Emory University
Partnering Agencies	Emory University schools, faculty or affiliated programs

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