Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers
Background: Caregivers 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 t...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-04-01
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| Series: | Intestinal Failure |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2950456224000241 |
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| author | Vikram K. Raghu Lisa Lakkis Flor de Abril Cameron Daniela Gattini Valdes Beverly Kosmach-Park Janel Hanmer |
| author_facet | Vikram K. Raghu Lisa Lakkis Flor de Abril Cameron Daniela Gattini Valdes Beverly Kosmach-Park Janel Hanmer |
| author_sort | Vikram K. Raghu |
| collection | DOAJ |
| description | Background: Caregivers 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. Method: Semi-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. Results: There 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. Conclusion: The 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. |
| format | Article |
| id | doaj-art-e23cb10498b242db93b70aebf1570726 |
| institution | Kabale University |
| issn | 2950-4562 |
| language | English |
| publishDate | 2024-04-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Intestinal Failure |
| spelling | doaj-art-e23cb10498b242db93b70aebf15707262025-08-20T03:42:43ZengElsevierIntestinal Failure2950-45622024-04-01210002410.1016/j.intf.2024.100024Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregiversVikram K. Raghu0Lisa Lakkis1Flor de Abril Cameron2Daniela Gattini Valdes3Beverly Kosmach-Park4Janel Hanmer5University of Pittsburgh School of Medicine, Pittsburgh, PA, USA; UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA; Corresponding author at: University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.University of Pittsburgh School of Medicine, Pittsburgh, PA, USAUniversity of Pittsburgh School of Medicine, Pittsburgh, PA, USAInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; Hospital for Sick Children, University of Toronto, Toronto, Ontario, CanadaUPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, USAUniversity of Pittsburgh School of Medicine, Pittsburgh, PA, USABackground: Caregivers 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. Method: Semi-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. Results: There 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. Conclusion: The 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.http://www.sciencedirect.com/science/article/pii/S2950456224000241Quality of lifeIntestinal rehabilitationShort bowel syndromePediatrics |
| spellingShingle | Vikram K. Raghu Lisa Lakkis Flor de Abril Cameron Daniela Gattini Valdes Beverly Kosmach-Park Janel Hanmer Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers Intestinal Failure Quality of life Intestinal rehabilitation Short bowel syndrome Pediatrics |
| title | Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers |
| title_full | Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers |
| title_fullStr | Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers |
| title_full_unstemmed | Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers |
| title_short | Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers |
| title_sort | applicability of the child health utility instrument to measure health utility in children with intestinal failure a qualitative study of caregivers |
| topic | Quality of life Intestinal rehabilitation Short bowel syndrome Pediatrics |
| url | http://www.sciencedirect.com/science/article/pii/S2950456224000241 |
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