Child Self-Reported Quality of Life in Pediatric Intestinal Failure
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Read the article on jpedsurg.org ↗Article · Nov 2021 · 1 min read
In brief
In brief
Prospective study of 69 children with intestinal failure reveals that child self-reported quality of life scores are consistently higher than parent-proxy reports across all age groups, though lower than healthy peers. Findings highlight the importance of capturing the child's perspective in intestinal rehabilitation programs to better understand patient experience and outcomes.
Written by the GCMD Library team from the article.
BACKGROUND
: Recent studies have focused on parent-reported health-related quality of life (HRQOL) in children with intestinal failure (IF). However, there is a paucity of data on HRQOL from the perspective of the child with IF.
METHODS
A prospective study of child self-reported HRQOL was performed in a regional intestinal rehabilitation program from 2015-2019. The PedsQL 4.0 Generic Core Scales were administered annually to children with IF ages five years and older along with their parents. Survey data was stratified by age and compared with parent-proxy scores and reference populations of healthy and chronically ill children. Linear mixed-effect models were constructed to identify associations with child self-reported HRQOL.
RESULTS
A total of 140 surveys were administered to 69 children and their parents. Median child age at survey was 8 (IQR 6-10) years. Child self-reported HRQOL scores increased with each increasing age range. Children reported higher HRQOL scores compared to parent-proxy data in all age groups. Children with IF had lower HRQOL scores compared to healthy children in all survey dimensions (p