Quantifying what matters most to patients and care partners in Alzheimer's disease
Bibliographic record
Abstract
Abstract Background The Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) Initiative works to identify and measure treatment‐related needs, preferences, and priorities of individuals across the continuum of AD. In the What Matters Most (WMM) study, we identified concepts of interest among patients and care partners and derived 42 items from these concepts. Method Respondents were recruited primarily from US clinical sites and assigned by a clinician to one of five groups: (1) AD risk factors without subjective memory complaints (SMC), (2) AD risk factors and SMC, and (3) mild AD, and care partners of patients with (4) moderate AD or (5) severe AD. Survey was administered online. Items were individually rated using a 5‐point verbal rating scale from 1 (Not at all important) to 5 (Extremely important). Responses were analyzed by group. Care partners (groups 4 and 5) rated item importance for themselves, not as patient proxies. Result Two hundred seventy‐four respondents (50‐65 in each group) completed the survey. Among all respondents, 193 (70.4%) were female, 173 (63.1%) identified as white, and 221 (80.7%) had education beyond high school. Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6) indicating all items were at least moderately to very important. Among care partners of patients with more severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4); most items were rated as at least moderately important. One item (driving) was rated as less than a little important in group 5. Five items were among the most important for all groups: taking medications correctly, not feeling down or depressed, not feeling anxious, worried or stressed, being able to stay safe, not feeling like a burden to others. Conclusion For SMC and mild AD patients and those at risk for AD, all items were important. Among care partners of more severe patients, most items were important, and one was unimportant. These results may indicate that the 42 items in the WMM survey capture symptoms and behaviors that are meaningful to patients and care partners and should be considered when evaluating impacts of potential AD treatments.
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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 | 0.006 | 0.026 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| 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".