Educational Needs and Considerations for a Visual Educational Tool to Discuss Parkinson's Disease
Bibliographic record
Abstract
BACKGROUND: In our clinical experience, people with Parkinson's disease (PwP) and their caregivers have difficulty understanding the complexities of the disease, which has a multitude of symptoms and involved therapies. We undertook a needs assessment to understand the need for, and to guide the development of, an educational tool. METHODS: We invited PwP, caregivers and health care providers (HCP) from across Canada to participate in an online survey to determine the need and desired content for such a tool. RESULTS: Respondents included 450 PwP, 335 caregivers, and 96 HCP from across Canada. 86.5% of HCP reported that it was "very important" for patients to understand issues in PD and 84.4% would use a visual aid to explain these issues. Results showed that 81.9-95.7% of caregivers and PwP were not "very satisfied" with the explanations of all domains in PD. Non-motor symptoms and cognitive issues were highly ranked by all groups as difficult to understand or explain. Older PwP (those with PD for less than 5 years and those who reported that their HCP spent less than 15 minutes counselling in each clinic visit) were less likely to fully understand and be satisfied with the explanations of most issues in PD. INTERPRETATION: There is a need for better patient education when discussing PD issues in the clinical setting. Older PwP that have been recently diagnosed have the greatest educational needs. Potential users indicate that a visual aid would help and non-motor symptoms, particularly cognitive issues, need to be a focus of such a tool.
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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 | 0.001 | 0.015 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| 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".