Understanding what aspects of Parkinson’s Disease matter most to patients and families

Background: Understanding what matters to people with Parkinson’s (PwP) and their family is essential to derive relevant clinical outcome measures and guide clinical care. Objectives: To explore what is important to PwP vs. family over time. Methods: A qualitative content-analysis of online survey data was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for PwP vs. family. Independent T-tests were used to identify significant between group differences for PwP vs. family at <2, 2-5, 6-10, 11-20, >20-year durations. ANOVA was used to assess for within group differences by disease duration. Results: Symptom priority changed over time with disease duration for both groups. PwP identified movement-related symptoms (walking, bradykinesia) as the most bothersome at all durations (n=677), while family (n=103) more strongly prioritized physical and psychosocial impacts (e.g., mobility, safety, interpersonal interactions, independence, and family impact). Conclusions: Important differences may exist between family and patient perspectives of what matters.