Do patient-reported outcome measures for SAH include patient, family, and caregiver priorities?
Bibliographic record
Abstract
OBJECTIVE: To systematically describe literature that identified patient/family/caregiver priorities for subarachnoid hemorrhage (SAH)-specific patient-reported outcome measures (PROMs), developed novel SAH PROMs by incorporating patient/family/caregiver perspectives, or involved patient/family/caregiver perspectives in evaluating existing SAH PROMs. METHODS: We conducted a scoping review using Embase and Ovid MEDLINE from inception to February 6, 2018. Study eligibility and data extraction was performed independently and in duplicate. For each eligible citation, we abstracted information about study population, design, type of patient involvement, and outcome measures. We planned a descriptive summary of all included studies. RESULTS: Our search yielded 4,961 citations, of which 15 met our eligibility criteria. Four of these included duplicate data, so our final sample consisted of 12 articles. There were 879 patients with SAH and 241 carers from the 11/12 articles that reported these data. One additional study involved 70 individuals but did not specify the number of carers or patients. We did not find any studies where SAH survivors or their families were directly involved in the full continuum of PROM outcome conceptualization from development to evaluation. We found 41 measures identified by patients with SAH. We identified only 2 PROMs developed with patients and only one that was a post hoc evaluation by patients. These 3 PROMs are subarachnoid hemorrhage outcome tool, Wessex Patient Carer Questionnaire, and Functional Status Examination, respectively. CONCLUSION: We identified 3 PROMs that have involved patients in some way, but the extent to which they reflect patient priorities remains unclear. More work is needed to ensure SAH research is not overlooking outcomes that are important to patients.
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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 | 0.050 | 0.202 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.004 |
| Bibliometrics | 0.011 | 0.017 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.003 | 0.006 |
| Open science | 0.002 | 0.002 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 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".