Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064190%3A_____%2F19%3AN0000014" target="_blank" >RIV/00064190:_____/19:N0000014 - isvavai.cz</a>

Result on the web

<a href="https://doi.org/10.1111/ppe.12589" target="_blank" >https://doi.org/10.1111/ppe.12589</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1111/ppe.12589" target="_blank" >10.1111/ppe.12589</a>

Result language

angličtina

Original language name

Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012

Original language description

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.

Czech name

—

Czech description

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Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30101 - Human genetics

Project

<a href="/en/project/NV17-29622A" target="_blank" >NV17-29622A: Effectiveness analysis of prenatal diagnosis of congenital malformations and survival of children born with a birth defect in 1994 – 2015</a><br>

Continuities

P - Projekt vyzkumu a vyvoje financovany z verejnych zdroju (s odkazem do CEP)<br>V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Publication year

2019

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

PAEDIATRIC AND PERINATAL EPIDEMIOLOGY

ISSN

0269-5022

e-ISSN

1365-3016

Volume of the periodical

33

Issue of the periodical within the volume

6

Country of publishing house

US - UNITED STATES

Number of pages

13

Pages from-to

436-448

UT code for WoS article

000491853500001

EID of the result in the Scopus database

2-s2.0-85074233326