J Pediatr Surg. 2021 Nov 14;S0022-3468(21)00776-4. doi: 10.1016/j.jpedsurg.2021.11.007.Online ahead of print.

Melissa Wong ¹, Victoria C Neam ², Simon P Horslen ³, Anna Faino ⁴, Patrick J Javid ⁵

Author information

¹University of Washington School of Medicine, Seattle, WA 98195, USA.

²Seattle Children's Hospital, Seattle, WA 98105, USA.

³University of Washington School of Medicine, Seattle, WA 98195, USA; Seattle Children's Hospital, Seattle, WA 98105, USA.

⁴Seattle Children's Research Institute, Seattle, WA 98101, USA.

⁵University of Washington School of Medicine, Seattle, WA 98195, USA; Seattle Children's Hospital, Seattle, WA 98105, USA. Electronic address: patrick.javid@seattlechildrens.org.

Abstract

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.