Discrepancies in symptom concerns and burden from the perspectives of parkinson's disease patients, caregivers, and physicians.
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BACKGROUND: Discrepancies in symptom concerns and the perceived burden among individuals with Parkinson's disease (PD), their caregivers, and their physicians can hinder effective care. OBJECTIVES: We investigated differences in symptom recognition and perceived impact among these groups. PARTICIPANTS AND METHODS: We conducted a cross-sectional study involving 193 PD patients, 80 caregivers, and their attending physicians at Keio University Hospital. All independently selected and ranked the three most troublesome symptoms from a comprehensive symptom list. The patients and physicians completed a questionnaire on motor complications including wearing-off, dyskinesia, delayed-on, no-on, and on-off, assessing both their recognition and the perceived burden. RESULTS: Bradykinesia consistently emerged as the most concerning symptom in all three groups. Discrepancies in other symptoms' prioritization were observed. Tremor was more frequently prioritized by patients than by caregivers or physicians. The caregivers tended to emphasize symptoms that directly impacted caregiving, e.g., axial symptoms and non-motor manifestations such as urinary urgency and excessive daytime sleepiness. Motor complications (e.g., wearing-off, dyskinesia) were not highly prioritized by patients, even among those with longer disease durations. The physicians recognized these complications slightly more frequently and rated them as more distressing. Other motor complications, e.g., delayed-on, no-on, and on-off phenomena were more frequently recognized by patients than by their physicians. CONCLUSION: Significant perceptual gaps exist in the recognition and perceived burden of individual symptoms among PD patients, caregivers, and physicians. Improving communication, raising awareness of under-recognized symptoms, and fostering shared decision-making are essential for optimizing PD patients' individualized care and enhancing quality of life.