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Improved survival among children with spina bifida in the United States
Mikyong Shin1, James E Kucik, Csaba Siffel
1Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and, Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.
Insights
Survival for infants with spina bifida has improved, but racial disparities persist. Black and Hispanic children still face poorer outcomes than white children, especially with normal birth weight.
Area of Science:
- Pediatric Neurology
- Public Health
- Epidemiology
Background:
- Spina bifida is a complex birth defect impacting child survival.
- Understanding survival trends across racial/ethnic groups is crucial for equitable healthcare.
- Prognostic factors influencing survival require ongoing investigation.
Purpose of the Study:
- To analyze trends in survival rates for children with spina bifida.
- To examine disparities in survival based on race/ethnicity and prognostic factors.
- To identify regional variations in survival across the United States.
Main Methods:
- Retrospective cohort study of 5165 infants with spina bifida (1979-2003).
- Data sourced from 10 US birth defects registries.
- Survival probabilities and hazard ratios estimated using Cox proportional hazard models.
Main Results:
- Overall 1-year survival improved for white, black, and Hispanic infants.
- Birth weight was the strongest predictor of survival; racial disparities were minimal in very low birth weight infants.
- Hispanic infants with low birth weight had 4-6 times higher mortality risk than whites; black-white disparity was greatest in normal birth weight infants.
Conclusions:
- Infant survival with spina bifida has improved, but significant racial/ethnic disparities remain.
- Black and Hispanic children experienced poorer survival than white children in recent cohorts.
- Further research is needed to understand the underlying causes of these survival differences.
Objective:
To evaluate trends in survival among children with spina bifida by race/ethnicity and possible prognostic factors in 10 regions of the United States.
Study Design:
A retrospective cohort study was conducted of 5165 infants with spina bifida born during 1979-2003, identified by 10 birth defects registries in the United States. Survival probabilities and adjusted hazard ratios were estimated for race/ethnicity and other characteristics using the Cox proportional hazard model.
Results:
During the study period, the 1-year survival probability among infants with spina bifida showed improvements for whites (from 88% to 96%), blacks (from 79% to 88%), and Hispanics (from 88% to 93%). The impact of race/ethnicity on survival varied by birth weight, which was the strongest predictor of survival through age 8. There was little racial/ethnic variation in survival among children born of very low birth weight. Among children born of low birth weight, the increased risk of mortality to Hispanics was approximately 4-6 times that of whites. The black-white disparity was greatest among children born of normal birth weight. Congenital heart defects did not affect the risk of mortality among very low birth weight children but increased the risk of mortality 4-fold among children born of normal birth weight.
Conclusions:
The survival of infants born with spina bifida has improved; however, improvements in survival varied by race/ethnicity, and blacks and Hispanics continued to have poorer survival than whites in the most recent birth cohort from 1998-2002. Further studies are warranted to elucidate possible reasons for the observed differences in survival.
