Self-reported respiratory and gastrointestinal outcomes in children with isolated congenital diaphragmatic hernia: A

Mary Patrice Eastwood1,2, Lennart Van der Veeken1, Luc Joyeux1

  • 1Department of Development and Regeneration, Biomedical Sciences, KU Leuven, Leuven, Belgium.

Insights

Medium-term respiratory and gastrointestinal outcomes in children with congenital diaphragmatic hernia (CDH) were evaluated. Respiratory symptoms decreased with age, with no correlation found between lung size or FETO use and self-reported outcomes.

Area of Science:

  • Pediatric Surgery
  • Neonatology
  • Pulmonology

Background:

  • Congenital diaphragmatic hernia (CDH) is a complex birth defect requiring specialized care.
  • Understanding medium-term outcomes is crucial for improving patient management and long-term prognosis.
  • Self-reported outcomes provide valuable insights into the patient's quality of life post-treatment.

Purpose of the Study:

  • To assess medium-term self-reported respiratory and gastrointestinal (GI) symptoms in children diagnosed with congenital diaphragmatic hernia (CDH).
  • To correlate these outcomes with prenatal indicators of disease severity, such as lung size and liver position.
  • To evaluate the impact of interventions like fetal endoluminal tracheal occlusion (FETO) on patient-reported symptoms.

Main Methods:

  • A prospective study was conducted across three fetal medicine units.
  • Families of children with isolated, left-sided CDH surviving over one year completed validated questionnaires for respiratory and GI symptoms.
  • Data on prenatal severity (O/E LHR, liver position) and perinatal factors were collected and analyzed using regression models.

Main Results:

  • A 45% response rate was achieved from 342 families, with comparable characteristics between participants and non-participants.
  • No significant correlations were found between perinatal variables and respiratory or GI scores.
  • Children aged 5 years and younger with lower observed/expected lung-to-head ratio (O/E LHR) reported increased respiratory symptoms (P=0.0175).
  • Children who underwent FETO (n=51) showed comparable GI and respiratory scores to those managed expectantly.

Conclusions:

  • Self-reported respiratory symptoms in children with CDH tend to decrease with increasing age.
  • Prenatal indicators like O/E LHR and interventions such as FETO did not show a significant correlation with medium-term self-reported respiratory or GI outcomes.
  • These findings highlight the importance of age-related symptom progression and suggest that current prenatal severity markers may not fully predict long-term patient-reported well-being.
Abstract

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