Quality of life in pediatric intestinal failure: A scoping review
Bibliographic record
Abstract
Background: Interest in quality of life (QoL) of children with intestinal failure (IF) has increased in recent years, driven by improved survival rates. Conceptualization and measurement of QoL remains understudied. As such, we conducted a scoping review to systemically catalogue measures of QoL, collate existing findings about QoL among IF patients, and examine risk and protective factors. Methods: A systemic search was conducted across four databases (MEDLINE, EMBASE, PsychINFO, CINAHL) from inception to May 6, 2024. Included articles had to explicitly operationalize and measure QoL among pediatric IF patients (< 18 years of age). Results: Thirty-three articles met inclusion criteria from an initial screen of 2124. Across studies, QoL was most frequently measured through standardized questionnaires, with the PedsQL most frequently employed. On self-report, patients reported worse health-related QoL, as well as lower physical, social, and school functioning, compared to controls. Adolescents with IF reported worse QoL than children. Youth and caregivers diverged in their reporting on QoL, with caregivers reporting worse overall QoL outcomes than children. Medical (bowel functioning), social (participation in activities with peers), and familial (parental stress and anxiety) risk and protective factors also emerged. Conclusions: IF has been found to have a negative impact on QoL for children and caregivers. It will be important to establish a standardized IF-specific QoL questionnaire to capture IF-relevant medical and treatment parameters, as well as include an evaluation of physical, emotional, social, psychological, and school functioning. Our findings help lay groundwork for establishing clinical guidelines for patient assessment and monitoring.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.006 | 0.027 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.005 | 0.004 |
| Bibliometrics | 0.014 | 0.015 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.002 | 0.002 |
| Research integrity | 0.002 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 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".