A survey of Parkinson's disease patients: most bothersome symptoms and coping preferences

Treatment for Parkinson's disease (PD) is symptomatic. Health professionals must therefore understand which of the many motor and non-motor problems that patients experience are the most troublesome, and what types of assistance patients believe would best help them cope with these problems.

To identify and understand potential issues of importance to patients with Parkinson's Disease.

We conducted surveys with 75 patients with PD in a Movement Disorders Program. We asked about: the two most bothersome PD-related problems, methods for coping with these problems, what motor and non-motor PD-related problems patients needed the most help with, and what a comprehensive assistance program for PD patients and caregivers should include. We used qualitative data analysis techniques to summarize responses.

The most bothersome problems cited were: tremors, lack of mobility, pain, imbalance, lack of energy/fatigue, having to give up previously enjoyed activities, dysarthria, and anxiety or depression. Frequently cited ways to cope with different types of problems included medications, physical activity, instrumental or practical support, and emotional support. When asked specifically about which non-motor problems elicited the most need for help, respondents most commonly mentioned depression and anxiety, "nothing," or cognitive problems. Participants suggested that a comprehensive assistance program for people with PD and their caregivers should include education, physical activity, and emotional support.

RESULTS from this survey highlight the diversity of patient experiences with PD, and the importance of strategies for coping with both motor and non-motor symptoms associated with Parkinson's Disease (in addition to medications).