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Addressing the hidden mortality in CDH: A population-based study.

Carmen Mesas Burgos1, Björn Frenckner1

  • 1Department of Pediatric Surgery, Karolinska Institutet, Stockholm, Sweden.

Journal of Pediatric Surgery
|October 18, 2016
PubMed
Summary
This summary is machine-generated.

Congenital diaphragmatic hernia (CDH) incidence in Sweden remained stable, but a significant hidden mortality rate of 45% exists. This highlights the need for improved detection and management strategies for CDH cases.

Keywords:
Congenital diaphragmatic hernia (CDH)Hidden mortalityIncidenceMortalityPopulation-based study

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Area of Science:

  • Pediatric Surgery
  • Neonatal Medicine
  • Public Health Epidemiology

Background:

  • Clinical management of congenital diaphragmatic hernia (CDH) has improved outcomes in single institutions.
  • Population-based studies reveal a concerning 'hidden mortality' associated with CDH.
  • Understanding the true burden of CDH requires a population-level perspective.

Purpose of the Study:

  • To determine the incidence of CDH in Sweden over a 27-year period.
  • To investigate and quantify the hidden mortality associated with CDH in a population-based setting.
  • To analyze trends in CDH prevalence and mortality over time.

Main Methods:

  • Population-based cohort study utilizing national registers (Patient Register, Medical Birth Register, Register of Congenital Malformations, Register for Causes of Death) from 1987-2013.
  • Calculation of incidence rates based on live births and registered CDH cases.
  • Definition and quantification of hidden mortality, including terminations of pregnancy (TOP), intrauterine fetal deaths (IUFD), and early neonatal deaths outside tertiary centers.

Main Results:

  • A total of 861 CDH cases were born, yielding an incidence of 3.0 per 10,000 live births.
  • Including TOP and IUFD, the total CDH incidence was 3.5 per 10,000 live births.
  • Overall mortality rate was 36%, with a significant decrease from 44% (1987-1999) to 27% (2000-2013). Hidden mortality in the later period was 30%, leading to a total mortality of 45%.

Conclusions:

  • The incidence of CDH in the Swedish population has remained unchanged over 27 years.
  • An increasing number of terminations of pregnancy (TOP) have led to a decrease in the prevalence of live-born CDH.
  • A substantial hidden mortality exists, contributing to an overall CDH mortality rate of 45% in this population.