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Prevalence and mortality in children with congenital diaphragmatic hernia: a multicountry study
Maria D Politis1, Eva Bermejo-Sánchez2, Mark A Canfield3
1Arkansas Center for Birth Defects Research and Prevention, and Department of Epidemiology, Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, AR.
Insights
Congenital diaphragmatic hernia (CDH) affects 2.6 per 10,000 births. While CDH mortality has decreased, it remains high in the first week of life and varies by registry type.
Area of Science:
- Pediatrics
- Public Health
- Medical Research
Background:
- Congenital diaphragmatic hernia (CDH) is a serious birth defect with significant mortality.
- Understanding CDH prevalence and mortality trends is crucial for improving infant outcomes.
Purpose of the Study:
- To determine the prevalence, mortality rates, and temporal trends of congenital diaphragmatic hernia (CDH) in children.
- To analyze CDH data from international surveillance programs.
Main Methods:
- Utilized data from 25 surveillance programs across 19 countries (1974-2015).
- Included live births, stillbirths, and terminations for CDH.
- Calculated prevalence and mortality using Poisson regression and Kaplan-Meier methods.
- Assessed time trends with Joinpoint regression analyses.
Main Results:
- CDH prevalence was 2.6 per 10,000 births, with a slight increase from 2001-2012.
- Overall CDH mortality was 37.7%, higher in hospital-based than population-based registries.
- Mortality rates showed a decreasing trend over time.
- A significant proportion of CDH deaths occurred within the first week of life.
Conclusions:
- Mortality associated with congenital diaphragmatic hernia has declined over the study period.
- High mortality persists in infants during their first week of life.
- Mortality rates for CDH vary depending on the type of registry (hospital-based vs. population-based).
Purpose:
This study determined the prevalence, mortality, and time trends of children with congenital diaphragmatic hernia (CDH).
Methods:
Twenty-five hospital- and population-based surveillance programs in 19 International Clearinghouse for Birth Defects Surveillance and Research member countries provided birth defects mortality data between 1974 and 2015. CDH cases included live births, stillbirths, or elective termination of pregnancy for fetal anomalies. Prevalence, cumulative mortality rates, and 95% confidence intervals (CIs) were calculated using Poisson regression and a Kaplan-Meier product-limit method. Joinpoint regression analyses were conducted to assess time trends.
Results:
The prevalence of CDH was 2.6 per 10,000 total births (95% CI: 2.5-2.7), slightly increasing between 2001 and 2012 (average annual percent change = 0.5%; 95% CI:-0.6 to 1.6). The total percent mortality of CDH was 37.7%, with hospital-based registries having more deaths among live births than population-based registries (45.1% vs. 33.8%). Mortality rates decreased over time (average annual percent change = -2.4%; 95% CI: -3.8 to 1.1). Most deaths due to CDH occurred among 2- to 6-day-old infants for both registry types (36.3%, hospital-based; 12.1%, population-based).
Conclusions:
The mortality of CDH has decreased over time. Mortality remains high during the first week and varied by registry type.
