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. 2013 Jan;131(1):e27-36.
doi: 10.1542/peds.2012-1616. Epub 2012 Dec 17.

Trends in survival among children with Down syndrome in 10 regions of the United States

James E Kucik  1 , Mikyong Shin, Csaba Siffel, Lisa Marengo, Adolfo Correa; Congenital Anomaly Multistate Prevalence and Survival Collaborative
Affiliations

Trends in survival among children with Down syndrome in 10 regions of the United States

James E Kucik et al. Pediatrics. 2013 Jan.

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 risk of dying in the neonatal period compared with infants of normal birth weight (aHR 23.8; 95% confidence interval [CI] 18.4-30.7). Presence of a heart defect increased the risk of death in the postneonatal 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 non-Hispanic 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).

Conclusions: The survival of children born with DS has improved and racial disparities in infant survival have narrowed. However, compared with non-Hispanic white children, non-Hispanic black children have lower survival beyond infancy. Congenital heart defects are a significant risk factor for mortality through age twenty.

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Figures

FIGURE 1
FIGURE 1
Kaplan-Meier survival curves by race and ethnicity and birth weight for individuals born with DS in from 10 US regions, 1983–2003.
FIGURE 2
FIGURE 2
Survival probability to 1 year among children with DS, 1997–2003.
FIGURE 3
FIGURE 3
Racial/ethnic variation in one year survival of children with Down syndrome in four states/regions (CA, GA, IA, NY) by select clinical characteristics, 1983–2003.
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