Applicability of the Child Health Utility instrument to measure health utility in children with intestinal failure: A qualitative study of caregivers
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.020 | 0.036 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.006 | 0.006 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".