A48 PARENT-REPORTED HEALTH RELATED QUALITY OF LIFE CARING FOR CHILDREN WITH PEDIATRIC FEEDING DISORDERS IN ALBERTA
Bibliographic record
Abstract
Abstract Background Children with pediatric feeding disorders (PFD), including those requiring tube feeding, need significant care. Caregiver burden includes time, cost, as well as worry over patient morbidity and mortality (1). This project used a validated health-related quality of life (HRQoL) tool for caregivers of children with PFD: the Feeding/Swallowing Impact Survey (FS-IS). The FS-IS has three subscales related to daily activities, worry, and feeding concerns, scored 1-5 with 5 being the most adverse. Prior studies have shown both the total sub-scale scores and the total score correlate with generic quality of life instruments for pediatric caregivers (2). Data was obtained from a provincial quality improvement initiative, the Alberta Provincial Pediatric Eating and Swallowing (PEAS) Project. Aims 1. To determine the HRQoL reported by caregivers of children with PFD in Alberta. 2. To determine if tube-feeding is associated with worse reported HRQoL. Methods Caregivers receiving feeding and swallowing services in Alberta were offered the opportunity to complete the FS-IS online or by phone at baseline and 12 months later. All demographic data was self-reported. Results In total 52 caregivers completed the surveys once and 16 at follow-up. Average baseline FSIS was 3.1 (range 1.2-4.7) and at follow up was 3.0 (range 1.5-4.2). There was no difference between the scores of those completing at both time points (p=0.78). At all time points, only 15% of the cohorts reported scores ≤2. As shown in Table 1, children who were tube-fed were older with a longer duration of PFD symptoms, however, HRQoL scores were not different to children not ever tube-fed. Conclusions Caregivers of children with PFD face challenges, which do not abate over time. Surprisingly, in our cohort, this is independent of the need for tube feeding and of the duration of PFD symptoms, although we acknowledge the small sample size of those who were never tube-fed. Longitudinal follow-up studies and strategies to improve quality of life are needed. * FS-IS Global Score (1=never to 5=almost always) Funding Agencies Alberta Health Services Maternal Newborn Child & Youth Strategic Clinical Network
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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 | 0.001 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 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".