Survival of Children With Critical Congenital Heart Defects in the National Birth Defects Prevention Study

Author:

Forestieri Nina E.1ORCID,Olshan Andrew F.2ORCID,Oster Matthew E.3,Ailes Elizabeth C.4ORCID,Fundora Michael P.34,Fisher Sarah C.5ORCID,Shumate Charles6ORCID,Romitti Paul A.7ORCID,F. Liberman Rebecca8ORCID,Nembhard Wendy N.9ORCID,Carmichael Suzan L.10,Desrosiers Tania A.2,

Affiliation:

1. Birth Defects Monitoring Program, State Center for Health Statistics Division of Public Health, North Carolina Department of Health and Human Services Raleigh North Carolina USA

2. Department of Epidemiology, Gillings School of Global Public Health University of North Carolina at Chapel Hill Chapel Hill North Carolina USA

3. Division of Pediatric Cardiology, Children's Healthcare of Atlanta; and School of Medicine Emory University Atlanta Georgia USA

4. Division of Birth Defects and Infant Disorders National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention Atlanta Georgia USA

5. Birth Defects Registry New York State Department of Health Albany New York USA

6. Birth Defects Epidemiology and Surveillance Branch Texas Department of State Health Services Austin Texas USA

7. Department of Epidemiology, College of Public Health University of Iowa Iowa City Iowa USA

8. Massachussets Center for Birth Defects Research and Prevention Massachusetts Department of Public Health Boston Massachusetts USA

9. Department of Epidemiology, College of Public Health; and Department of Pediatrics, College of Medicine University of Arkansas for Medical Sciences Little Rock Arkansas USA

10. Department of Pediatrics Stanford University School of Medicine Stanford California USA

Abstract

ABSTRACTBackgroundCritical congenital heart defects (CCHDs) are associated with considerable morbidity and mortality. This study estimated survival of children with nonsyndromic CCHDs and evaluated relationships between exposures of interest and survival by CCHD severity (univentricular or biventricular function).MethodsThis analysis included 4380 infants with CCHDs (cases) born during 1999–2011 and enrolled in the National Birth Defects Prevention Study, a multisite, population‐based case–control study of major birth defects. Cases were linked to state death files. Nonparametric Kaplan–Meier survival functions were used to estimate 1‐ and 5‐year survival probabilities overall and by severity group (univentricular/biventricular) stratified by demographic and clinical exposure variables of interest. The log‐rank test was used to determine whether stratified survival curves were equivalent. Survival and 95% confidence intervals (CIs) were also estimated using Cox proportional hazards modeling adjusted for maternal age, education, race/ethnicity, study site, and birth year.ResultsOne‐ and five‐year survival rates were 85.8% (CI 84.7–86.8) and 83.7% (CI 82.5–84.9), respectively. Univentricular 5‐year survival was lower than biventricular case survival [65.3% (CI 61.7–68.5) vs. 89.0% (CI 87.8–90.1; p < 0.001)]. Clinical factors (e.g. preterm birth, low birthweight, and complex/multiple defects) were associated with lower survival in each severity group. Sociodemographic factors (non‐Hispanic Black race/ethnicity, <high school education, smoking, and lower household income) were only associated with survival among biventricular cases.ConclusionsMortality among children with CCHDs occurred primarily in the first year of life. Survival was lower for those with univentricular defects, and social determinants of health were most important in predicting survival for those with biventricular defects.

Funder

Centers for Disease Control and Prevention

Publisher

Wiley

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