A Mixed Methods Approach to Explore the Experience of Pain and Its Management in People with Parkinson’s Disease

Introduction. Pain in Parkinson’s disease (PD) is common but poorly understood, with most research to date taking a mechanistic approach. This mixed methods study takes a broader biopsychosocial approach to assess and describe contributors of pain and explore pain management and the relationship between pain and physical activity in people with PD (PwPD) and chronic pain. Methods. A structured survey evaluated respondents’ contributors of pain using standardized, self-report assessments of the following: pain, peripheral neuropathy, central nociplastic change, emotional dysregulation or pathology, and maladaptive cognitions. Semistructured individual interviews were conducted with purposively sampled survey participants and analyzed using inductive thematic analysis. Results. Eighty-nine PwPD (mean age 67 years, 55% female) completed the survey. The most common pain contributors were maladaptive cognitions (62%), central nociplastic change (49%), and emotional dysregulation (44%). Approaches to pain management and the response to physical activity were variable within and across individuals with different pain contributors. Four themes emerged from interviews with 24 participants: (1) causative perceptions of pain are diverse; (2) sense of control influences disease acceptance and exercise self-efficacy; (3) belief in the value of therapy; and (4) pain as the unspoken PD symptom. Physical activity was used by PwPD for pain management; however, the relationship between pain and physical activity varied based on sense of control. Conclusions. Clinicians should screen for pain and assess its contributors to provide individualized, multidimensional pain management that considers the biological, psychological, and social factors of pain in PwPD. It is plausible that such an approach would promote a better sense of control for PwPD.