A Survey of People With Parkinson's and Their Carers: The Management of Pain in Parkinson's.

Background: Pain in Parkinson's is problematic but under treated in clinical practice. Healthcare professionals must understand the impact of pain in Parkinson's and patient preferences for management.

Objective: To understand the impact of pain in Parkinson's and to understand current management and preferences for pain management.

Methods: We conducted a national survey with 115 people with Parkinson's (PwP) and 10 carers. Both closed and open questions were used. The questions focused on how pain affected the individual, healthcare professional involvement in supporting pain management, current pain management strategies and views on future pain management interventions. We used descriptive statistics to summarize closed responses and thematic analysis to summarize open question responses.

Results: 70% of participants reported pain impacted their daily life. Pain had a multifactorial impact on participants, affecting movement, mood and quality of life. Improved pain management was viewed to have the potential to address each of these challenges. Pain affected a number of different sites, with low back pain and multiple sites being most frequently reported. Exercise was the most frequently noted strategy (38%) recommended by healthcare professionals for pain management. PwP would value involvement from healthcare professionals for future pain management, but also would like to self-manage the condition. Medication was not suggested as a first line strategy.

Conclusions: Despite reporting engagement in some strategies to manage pain, pain still has a wide-ranging impact on the daily life of PwP. Results from this survey highlight the need to better support PwP to manage the impact of pain.