Abstract
Understanding what matters to people with Parkinson’s and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson’s disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson’s UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson’s for people with the disease vs. family of people with Parkinson’s. Independent T-tests were used to identify significance of between group differences for patients 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. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.