Trends in Survival Among Children With Down Syndrome in 10 Regions of the United States

Abstract

OBJECTIVE-This study examined changes in survival among children with Down syndrome (DS) by race/ethnicity in 10 regions of the United States. A retrospective cohort study was conducted on 16 506 infants with DS delivered during 1983-2003 and identified by 10 US birth defects monitoring programs. Kaplan-Meier survival probabilities were estimated by select demographic and clinical characteristics. Adjusted hazard ratios (aHR) were estimated for maternal and infant characteristics by using Cox proportional hazard models. RESULTS-The overall 1-month and 1-, 5-, and 20-year survival probabilities were 98%, 93%, 91%, and 88%, respectively. Over the study period, neonatal survival did not improve appreciably, but survival at all other ages improved modestly. Infants of very low birth weight had 24 times the Address correspondence to James E. Kucik, MPH, Centers for Disease Control and Prevention, 1600 Clifton Rd, MS E-86, Atlanta, GA 30333. jkucik@cdc.gov. FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.Mr Kucik conceptualized and designed the study, carried out the analyses, drafted the initial manuscript, and approved the final manuscript as submitted; Dr Shin conceptualized and designed the study, carried out the initial analyses, contributed to the initial draft of the initial manuscript, and approved the final manuscript as submitted; Dr Siffel conceptualized and designed the study, carried out the initial analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted; Ms Marengo coordinated data submission from 1 of the study sites, contributed to the initial draft of the initial manuscript, reviewed and revised the manuscript, and approved the final manuscript as submitted; and Dr Correa conceptualized and designed the study, reviewed and revised the manuscript, and approved the final manuscript as submitted.This work was presented in part at the annual meeting of the National Birth Defects Prevention Network; February 11-13, 2008; Washington, DC; and at the annual meeting of the 21st Society for Pediatric and Perinatal Epidemiologic Research; June 23-24, 2008; Chicago, IL.The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention. FUNDING:No external funds were used for this study, and there were no financial conflicts of interest among Centers for Disease Control and Prevention staff. . Presence of a heart defect increased the risk of death in the post-neonatal period nearly fivefold (aHR 4.6; 95% CI 3.9-5.4) and continued to be one of the most significant predictors of mortality through to age 20. The postneonatal aHR among nonHispanic blacks was 1.4 (95% CI 1.2-1.8) compared with non-Hispanic whites and remained elevated by age 10 (2.0; 95% CI 1.0-4.0). HHS Public Access CONCLUSIONS-The survival of children born with DS has improved and racial disparities in infant survival have ...