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Published on: June 20, 2020
Child self-reported quality of life in pediatric intestinal failure
Melissa Wong1, Victoria C Neam2, Simon P Horslen3
1University of Washington School of Medicine, Seattle, WA 98195, USA.
Insights
Children with intestinal failure (IF) report better health-related quality of life (HRQOL) than their parents perceive. However, their HRQOL remains lower than healthy peers, with longer bowel length linked to poorer outcomes.
Area of Science:
- Pediatric gastroenterology
- Child health outcomes
- Quality of life research
Background:
- Limited data exists on health-related quality of life (HRQOL) in children with intestinal failure (IF) from the child's perspective.
- Most existing research relies on parent-reported HRQOL, potentially missing the child's unique experiences.
Purpose of the Study:
- To investigate child self-reported HRQOL in pediatric patients with IF.
- To compare child-reported HRQOL with parent-proxy reports and normative data.
- To identify factors associated with HRQOL in children with IF.
Main Methods:
- Prospective study conducted in a regional intestinal rehabilitation program (2015-2019).
- Annual administration of the PedsQL 4.0 Generic Core Scales to children (≥5 years) with IF and their parents.
- Analysis included age stratification, comparison with parent-proxy scores and reference populations, and linear mixed-effect models.
Main Results:
- 140 surveys from 69 children with IF (median age 8 years).
- Child-reported HRQOL scores increased with age and were higher than parent-proxy scores across all age groups.
- Children with IF reported significantly lower HRQOL than healthy children and lower school/social functioning than chronically ill children.
- Longer remnant bowel length was associated with decreased child-reported HRQOL.
Conclusions:
- Children with IF provide a more optimistic HRQOL perspective than their parents.
- Despite age-related improvements, child-reported HRQOL in IF remains suboptimal compared to peers.
- The inverse relationship between bowel length and HRQOL warrants further investigation.
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 to 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 < 0.001) and to children with chronic illness in the school and social functioning dimensions (p < 0.05). In adjusted analysis, longer remnant bowel length was independently associated with decreased HRQOL scores in children (p < 0.05).
Conclusions:
Children with IF reported better HRQOL compared to parent-proxy data. While these HRQOL scores improved with age, they remain significantly lower than healthy and chronically ill peers. The association between bowel length and child-reported HRQOL deserves further investigation.
Level Of Evidence:
Level II.
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