“There is generally no focus on my pain from the healthcare staff”: A qualitative study exploring the perspective of patients with Parkinson’s disease

Objectives - Pain is a prevalent non-motor symptom in patients with Parkinson’s Disease (PD) and associated with significant quality-of-life impairments. Yet, qualitative literature examining how patients with PD experience their pain and pain treatment is scarce. The aim of this study is to understand and report firsthand experiences with pain in PD. Methods - Individual interviews (N = 15 patients with PD) following a semi-structured interview guide organized in 7 main topics and 18 subtopics covering both medical and psychological aspects of pain in PD. Data were analyzed by a reflexive thematic analysis. Results - Three major themes emerged: (1) Pain is related to PD: A majority of interviewees were confident pain is caused by motor symptoms and related to sleep disturbances. (2) Healthcare professionals neglect pain in PD: frequently, interviewees expressed satisfaction with general PD treatment, yet urged healthcare professionals to show interest in their pain. Many were uncertain as to who was responsible for pain treatment and wished for increased coordination among healthcare professionals. (3) Treatment of pain is insufficient: self-medication was prevalent. Most interviewees told they hide their pain. Interviewees broadly reported low and/or temporary effect of alternative pain treatment, yet perceived training as efficient. Multiple interviewees called for research on physical or psychological rather than pharmacological pain treatment. Conclusion - Patients with PD yearn for dialogue on pain with healthcare professionals. Frequently, patients take medication unsupervised, suggesting a need for integrating assessment of self-medication in standard treatment regimes. Patients urge healthcare professionals to discuss pain with them and acknowledge that motor symptoms may cause pain.