Parent-Reported Health-Related Quality of Life Outcomes and Impact on Family of Congenital Diaphragmatic Hernia Survivors After Repair: A Cross-Sectional Comparison to Healthy Controls

Rajasegaran S 1 , Nooraziz AN 1 , Abdullah A 2 , Sanmugam A 3 , Singaravel S 3 , Gan CS 4 Show all authors , Nah SA 5

Affiliations 

  • 1 Division of Paediatric & Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  • 2 Division of Paediatric & Neonatal Surgery, Department of Surgery, University of Malaya Medical Centre, Kuala Lumpur, Malaysia
  • 3 Division of Paediatric & Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia; Division of Paediatric & Neonatal Surgery, Department of Surgery, University of Malaya Medical Centre, Kuala Lumpur, Malaysia
  • 4 Paediatric Intensive Care Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  • 5 Division of Paediatric & Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia; Division of Paediatric & Neonatal Surgery, Department of Surgery, University of Malaya Medical Centre, Kuala Lumpur, Malaysia. Electronic address: shireen.nah@um.edu.my
J Pediatr Surg, 2024 Apr;59(4):577-582.
PMID: 38160184 DOI: 10.1016/j.jpedsurg.2023.12.007

Abstract

BACKGROUND: Congenital diaphragmatic hernia (CDH) survivors often experience long-term CDH-associated morbidities, including musculoskeletal, gastrointestinal and respiratory issues. This study evaluates parent-reported health-related quality of life (HRQOL) and family impact of the disease.

METHODS: Electronic medical records (EMR) were reviewed and phone surveys performed with parents of CDH survivors who underwent repair at our institution from 2010 to 2019. They completed the following Pediatric Quality of Life Inventory™ (PedsQL™) questionnaires: Generic Core Scales 4.0 (parent-proxy report) and Family Impact (FI) Module 2.0. Age-matched and gender-matched healthy controls from an existing database were used for comparison. Subgroup analysis of CDH patients alone was also performed. Appropriate statistical analysis was used with p 

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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