Health-related quality of life in children with Hirschsprung disease and children with functional constipation: Parent-child variability. J Pediatr Surg 2022 Aug;57(8):1694-1700
Date
05/02/2022Pubmed ID
35491270Pubmed Central ID
PMC9296600DOI
10.1016/j.jpedsurg.2022.04.009Scopus ID
2-s2.0-85129972812 (requires institutional sign-in at Scopus site) 5 CitationsAbstract
BACKGROUND: Health-related quality of life (HRQOL) is an important outcome among children with Hirschsprung Disease (HD), but there are challenges in interpreting findings in previous studies owing to the choice of a comparator group and informant. We compared parent-proxy versus child self-report HRQOL in children with HD to children with functional constipation (FC) and examined predictors of HRQOL.
METHODS: Data of 126 children (5-18 years, 60.3% male, HD: n = 52, FC: n = 74) were acquired from the Pediatric Colorectal and Pelvic Learning Consortium. Demographics, clinical variables, HRQOL (Pediatric Quality of Life Inventory parent-proxy; child self-report) and functional outcomes (Baylor Continence Scale, Cleveland Clinic Constipation Scoring System) were collected.
RESULTS: Parent and child HRQOL was similar for both cohorts, with higher scores on physical functioning and lower scores on emotional and school functioning. For children with HD, demographics and clinical variables did not predict HRQOL in multivariable regression models. For children with FC, greater severity of constipation predicted lower HRQOL (parent-proxy: B = -2.14, p < 0.001; child: B = -1.75, p = 0.001). Parent-child agreement on HRQOL scores was poor to moderate in the HD group (intraclass correlations (ICC)=0.38-0.74), but moderate to excellent in the FC group (ICC=0.63-0.84). Furthermore, parents of children with FC and ≤10 years overestimated children's HRQOL (proportional OR 4.59 (1.63, 13.85); p = 0.004).
CONCLUSION: Clinical symptoms and demographic factors did not predict HRQOL among children with HD, highlighting the need to examine other biopsychosocial factors to understand long term HRQOL. Low parent-child HRQOL agreement in children with HD demonstrates the importance of obtaining parent and child perspectives.
LEVEL OF EVIDENCE: III.
TYPE OF STUDY: Prognosis study.
Author List
Tham SW, Rollins MD, Reeder RW, Lewis KE, Calkins CM, Avansino JR, Palermo TMAuthor
Casey Matthew Calkins MD Professor in the Surgery department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
ChildConstipation
Female
Hirschsprung Disease
Humans
Male
Parent-Child Relations
Parents
Quality of Life
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