Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers

Abstract

BackgroundCaregivers of children with intestinal failure make many difficult decisions without quantitative data to support how those decisions affect quality of life (QoL). To determine if the Child Health Utility instrument (CHU9D) could be used to collect standardized QoL data, the study aims to determine the most important QoL domains for caregivers of children with intestinal failure. MethodSemi-structured interviews were completed with caregivers of children with intestinal failure that focused on their perspectives of QoL. A content analysis was performed to determine if caregiver perspectives aligned with the nine domains of the CHU9D to support its use in children with intestinal failure. ResultsThere were 10 participants in the study: 9 biological mothers and 1 biological father. Indications for intestinal failure included short bowel syndrome (n = 8), congenital enteropathy (n = 1), and intestinal dysmotility (n = 1). Caregivers endorsed all 9 domains as important with 77.8 % of domains having unanimous agreement. Annoyance and tiredness were each recognized as unnecessary by two participants. Without prompting, most caregivers described QoL through the domains of sadness, daily routine, and activities. When a subgroup of 8 participants were asked specifically about which domains were most important, sadness was cited by the majority (7/8) of caregivers. ConclusionThe caregiver perspective of important domains for assessing QoL is well-reflected through use of the CHU9D. Opportunities exist for examining whether fewer domains may be sufficient, Future work should confirm these findings directly with children with intestinal failure.