Living with pain and Parkinson’s developing an understanding of the impact, trajectory, and pain management needs: A qualitative interview study protocol.

Introduction: Pain is reported as one of the most troubling symptoms for people with Parkinson’s (PwP); however, the literature exploring their lived experience of pain and how to manage it is limited. Pain affects PwP at all stages of their condition and can fluctuate and change over time. Therefore, it is pertinent to speak to PwP to understand their experiences of pain to inform the development of tailored behavioural interventions to manage pain. How pain interacts with other Parkinson’s symptoms lacks consensus. Gaining a better understanding of this from the perspective of PwP is important to inform interventions. Exploring the behavioural determinants, including the barriers and enablers to pain management from the perspective of PwP, the role of healthcare professionals and impact of other symptoms alongside pain will inform the development of a fit for purpose, pain management toolkit for PwP.
Methods and analysis: A longitudinal qualitative study using semi-structured interviews at two time points within an 18-month period will be conducted. People with Parkinson’s living with pain will be purposefully sampled from four NHS sites in the North of England. Data will be thematically analysed with reference to the Theoretical Domains Framework.
Ethics and dissemination: A favourable ethical opinion has been granted by the NHS East Midlands – Derby Research Ethics Committee (22/EM/0176) and the NHS Health Research Authority (IRAS ID 316403). Findings will be disseminated via scientific conferences, academic journals, lay summaries and public engagement events.
Strengths and limitations of this study

• This study will qualitatively explore people with Parkinson’s pain experience longitudinally, which will develop detailed understanding of the trajectory of pain in Parkinson’s and pain management over time.
• This study will use the Theoretical Domains Framework to inform interview question design and analysis to guide the selection of theory-linked behaviour change techniques in future research.
• This study is recruiting from the North of England, so transferability will need to be considered in the context of location.