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
Document Type
Article
Publication Date
4-1-2024
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( TM) (PedsQL( TM)) 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 < 0.05 signi ficance. Data are reported as median (range). Ethical approval was obtained. Results: Of 76 CDH survivors, 45 parents (59 %) consented for study participation. Patients and controls were aged 6 (3-12) years; 51 % were male. In Core Scales, there were signi ficant differences between the groups in the overall scores (p = 0.003) and the psychosocial health sub -scores (p = 0.004), but no difference in the physical health domain scores. In the Family Impact Module, there were no signi ficant differences between the groups in overall scores, in parent HRQOL and in family functioning sub -scores. However, CDH patients with learning disabilities had signi ficantly worse Family Impact Module overall scores compared to CDH patients without learning disabilities (p = 0.04). Conclusion: The overall HRQOL in children with CDH survivors is worse compared to controls, but impact on family appears similar. We highlight the need for long-term follow-up of CDH patients, especially those with learning disabilities. Healthcare providers should formulate tailored care plans to address patient and caregiver needs.
Keywords
Children, Parents, Congenital anomalies, Outcomes, Quality of life
Divisions
surgerydept,ummc
Publication Title
Journal of Pediatric Surgery
Volume
59
Issue
4
Publisher
Elsevier
Publisher Location
1600 JOHN F KENNEDY BOULEVARD, STE 1800, PHILADELPHIA, PA 19103-2899 USA