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Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012
MK. Bakker, V. Kancherla, MA. Canfield, E. Bermejo-Sanchez, JD. Cragan, S. Dastgiri, HEK. De Walle, ML. Feldkamp, B. Groisman, M. Gatt, P. Hurtado-Villa, K. Kallen, D. Landau, N. Lelong, JS. Lopez Camelo, L. Martínez, M. Morgan, OM. Mutchinick,...
Language English Country Great Britain
Document type Journal Article, Observational Study
PubMed
31637749
DOI
10.1111/ppe.12589
Knihovny.cz E-resources
- MeSH
- Child Mortality * MeSH
- Child MeSH
- Infant MeSH
- Infant Mortality * MeSH
- Humans MeSH
- Stillbirth epidemiology MeSH
- Live Birth epidemiology MeSH
- Infant, Newborn MeSH
- Child, Preschool MeSH
- Prevalence MeSH
- Registries MeSH
- Spinal Dysraphism epidemiology mortality MeSH
- Check Tag
- Child MeSH
- Infant MeSH
- Humans MeSH
- Male MeSH
- Infant, Newborn MeSH
- Child, Preschool MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Observational Study MeSH
- Geographicals
- Asia MeSH
- Europe MeSH
- South America MeSH
- North America MeSH
BACKGROUND: Medical advancements have resulted in better survival and life expectancy among those with spina bifida, but a significantly increased risk of perinatal and postnatal mortality for individuals with spina bifida remains. OBJECTIVES: To examine stillbirth and infant and child mortality among those affected by spina bifida using data from multiple countries. METHODS: We conducted an observational study, using data from 24 population- and hospital-based surveillance registries in 18 countries contributing as members of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Cases of spina bifida that resulted in livebirths or stillbirths from 20 weeks' gestation or elective termination of pregnancy for fetal anomaly (ETOPFA) were included. Among liveborn spina bifida cases, we calculated mortality at different ages as number of deaths among liveborn cases divided by total number of liveborn cases with spina bifida. As a secondary outcome measure, we estimated the prevalence of spina bifida per 10 000 total births. The 95% confidence interval for the prevalence estimate was estimated using the Poisson approximation of binomial distribution. RESULTS: Between years 2001 and 2012, the overall first-week mortality proportion was 6.9% (95% CI 6.3, 7.7) and was lower in programmes operating in countries with policies that allowed ETOPFA compared with their counterparts (5.9% vs. 8.4%). The majority of first-week mortality occurred on the first day of life. In programmes where information on long-term mortality was available through linkage to administrative databases, survival at 5 years of age was 90%-96% in Europe, and 86%-96% in North America. CONCLUSIONS: Our multi-country study showed a high proportion of stillbirth and infant and child deaths among those with spina bifida. Effective folic acid interventions could prevent many cases of spina bifida, thereby preventing associated childhood morbidity and mortality.
CARIS The Congenital Anomaly Register for Wales Singleton Hospital Swansea UK
Department of Epidemiology Emory University Rollins School of Public Health Atlanta GA USA
Department of Medical Genetics Thomayer Hospital Prague Czech Republic
Department of Neonatology Soroka Medical Center Beer Sheva Israel
ECEMC Instituto de Salud Carlos 3 Madrid Spain
ECLAMC Center for Medical Education and Clinical Research Buenos Aires Argentina
Health Services Management Research Centre Tabriz University of Medical Sciences Tabriz Iran
Human Genetics Institute Pontificia Universidad Javeriana Bogotá Colombia
Malta Congenital Anomalies Registry Directorate for Health Information and Research Valetta Malta
National Board of Health and Welfare and University of Lund Stockholm Sweden
Omni Net for Children International Charitable Fund Rivne Rivne Ukraine
Slovak Teratologic Information Centre Slovak Medical University Bratislava Slovak Republic
References provided by Crossref.org
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