The Values and Preferences of People Living With Motor Neurone Disease (MND): A Systematic Review Protocol
Bibliographic record
Abstract
ABSTRACT Objective To systematically review the values and preferences of people with lived experience of motor neurone disease (MND), including those living with MND, caregivers and genetic carriers, regarding their health‐related outcomes. Introduction MND is a devastating neurodegenerative disease that significantly impacts those living with the disease, their caregivers, and their families. Understanding the values and preferences of those affected by MND is crucial for providing patient‐centred care and developing trustworthy guidelines. Eligibility Criteria Studies will be included if they report on the values and preferences of adults living with MND; caregivers and families of those diagnosed with MND; clinicians as a proxy for adults living with MND; or asymptomatic genetic carriers of MND. Peer‐reviewed studies utilising either quantitative or qualitative methodologies (or both) will be eligible for inclusion in this review. Methods and Analysis A comprehensive search of electronic databases will be conducted to identify relevant studies. Data extraction, risk of bias assessment (of quantitative studies), and assessment of methodological limitations (of qualitative studies) will be performed independently by two reviewers. Quantitative data will be pooled using meta‐analysis where appropriate, and qualitative data will be synthesised following a modified meta‐aggregative approach. The relevant GRADE approach will be used to assess the certainty of evidence. Systematic Review Registration Number CRD420250653287.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.007 | 0.034 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.004 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".