4: Development of a Core Outcome Set for Pediatric Chronic Intestinal Failure
Bibliographic record
Abstract
Introduction: In research on pediatric chronic intestinal failure, heterogeneity in reported definitions and outcomes exists. This results in reporting bias and impossibility of evidence synthesis. Also, reported outcomes should be clinical relevant to both healthcare providers, parents and patients in this field. Therefore, the aim of this study is to create a core outcome set for pediatric chronic intestinal failure. This is a set of standardized outcomes agreed upon by key stakeholders. Methods: Based on data from a recent systematic review, reporting that almost hundred different outcome measures are used in research concerning pediatric chronic intestinal failure, a Delphi study was performed through quantitative questionnaires among key stakeholders. This was followed by a consensus meeting with an expert panel including patient representatives and health care professionals from various disciplines throughout Europe to achieve consensus on the core outcome set. Results: Seventy-two stakeholders (79%) completed all three rounds of the Delphi process. Ninety-eight outcomes were assessed and five new outcomes were added in the first round. During the consensus meeting two outcomes were modified to make it more specific and to prevent confusion. The following ten outcomes were included in the final COS: weaning from parenteral nutrition, growth, mortality, central line related infection, central line longevity, sepsis not related to central line infection, central line related thrombosis, IFALD, (serious) adverse events and health related quality of life. Conclusion: This pediatric chronic intestinal failure COS consists of ten outcomes important for all key stakeholders. Usage of at least two outcomes from this set in future research will minimize outcome heterogeneity and enhance the value of evidence synthesis. This will eventually lead to better quality of research in this field, resulting to more evidence-based clinical practice.Figure 1.: Delphi Process
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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 | 0.065 | 0.117 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.002 | 0.006 |
| Bibliometrics | 0.006 | 0.004 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.006 | 0.001 |
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".