Nothing About Us Without Us: A Scoping Review and Priority-Setting Partnership in Type 1 Diabetes and Exercise
Bibliographic record
Abstract
Abstract Objectives Examine the characteristics of patient engagement (PE) practices in exercise-based randomized trials in type 1 diabetes (T1D), and facilitate T1D stakeholders in determining the top ten list of priorities for exercise research. Design Two methodological approaches were employed: a scoping review and a modified James Lind Alliance priority-setting partnership. Methods Published (Medline, Embase, CINAHL, and Central databases) and grey literature ( www.clinicaltrials.gov ) were searched to identify randomized controlled trials of exercise interventions lasting minimum four weeks and available in English. We extracted information on PE and patient-reported outcomes (PROMs) to identify if patient perspectives had been implemented. Based on results, we set out to determine exercise research priorities as a first step towards a patient-engaged research agenda. An online survey was distributed across Canada to collect research questions from patients, caregivers and healthcare providers. We qualitatively analyzed submitted questions and compiled a long-list that a twelve-person stakeholder steering committee used to identify the top ten priority research questions. Results Of 9,962 identified sources, 19 published trials and 4 trial registrations fulfilled inclusion criteria. No evidence of PE existed in any included study. Most commonly measured PROMs were frequency of hypoglycemia (n=7) and quality of life (n=4). The priority-setting survey yielded 194 submitted research questions. Steering committee rankings identified 10 priorities focused on lifestyle factors and exercise modifications to maintain short-term glycemic control. Conclusion Recent exercise-based randomized trials in T1D have not included PE and PROMs. Patient priorities for exercise research have yet to be addressed with adequately designed clinical trials.
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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 | 0.225 | 0.412 |
| Meta-epidemiology (narrow) | 0.002 | 0.003 |
| Meta-epidemiology (broad) | 0.008 | 0.009 |
| Bibliometrics | 0.048 | 0.050 |
| Science and technology studies | 0.004 | 0.005 |
| Scholarly communication | 0.015 | 0.016 |
| Open science | 0.004 | 0.010 |
| Research integrity | 0.006 | 0.005 |
| Insufficient payload (model declined to judge) | 0.003 | 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".