The importance of care partner input in Alzheimer’s disease (AD) drug development
Bibliographic record
Abstract
Abstract Background In AD, the role of the care partner (CP) is essential to therapeutic development due to their gradually increasing role over the course of disease progression. Many current trials require CPs to report on patient symptoms later in the disease. Studies have also suggested that the role of the care partner‐patient dyad may be linked to reliable outcomes in drug development. However, there are issues in data collection via patient proxy due to concerns around reliability of information and reporting bias. Methods The AD PACE WMM Study assessed needs and priorities of patients and CPs throughout AD through both qualitative and quantitative methods. In both phases of the WMM study, patients in the earlier stages of disease served as their own reporters: those with clinical pathology of AD (Group 1), with MCI (Group 2), and with mild AD (Group 3) served as their own reporters. CPs for those with moderate (Group 4) or severe AD (Group 5) reported what was important to them as CPs. Qualitative results were used to develop patient and CP surveys in which respondents rated the importance of 42 items. Results CPs (n=119) were mostly women in their mid‐50s with high SES statuses. The average age of the corresponding care recipients was approximately 80 years and most were women. In general, CPs rated items related to the emotional well‐being of the care recipient (e.g., having a sense of self‐worth; not feeling down, depressed, anxious, anxious, worried, stressed; not feeling like a burden to others) highly. When taken as a whole, mean CP ratings for what is important to them were equal to or lower than mean patient ratings, especially for items with lowest importance ratings (driving, not having difficulty with work, planning and organizing activities). Conclusion Understanding and identifying the multiple ways in which CPs can provide critical input in AD therapeutic development needs further investigation. The WMM study identified emotional well‐being as a key priority for CPs for those with moderate or severe AD. Future studies and guidance should examine opportunities for CP input on drug development as CPs provide critical perspectives on the AD patient experience.
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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 | 0.018 | 0.038 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.004 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.005 | 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".