Trajectories of pain over 6 years in early Parkinson’s disease: ICICLE-PD

Introduction Pain is a common non-motor symptom in Parkinson’s disease (PD), affecting up to 85% of patients. The frequency and stability of pain over time has not been extensively studied. There is a paucity of high-quality studies investigating pain management in PD. To develop interventions, an understanding of how pain changes over the disease course is required. Methods One hundred and fifty-four participants with early PD and 99 age-and-sex-matched controls were recruited as part of a longitudinal study (Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in PD, ICICLE-PD). Pain data were collected at 18-month intervals over 72 months in both groups using the Nonmotor Symptom Questionnaire (NMSQ), consisting of a binary yes/no response. Two questions from the Parkinson’s Disease Questionnaire (PDQ-39) were analysed for the PD group only. Results Unexplained pain was common in the PD group and occurred more frequently than in age-matched controls. ‘Aches and pains’ occurred more frequently than ‘cramps and muscle spasms’ at each time point (p < 0.001) except 54 months. Conclusions This study shows that pain is prevalent even in the early stages of PD, yet the frequency and type of pain fluctuates as symptoms progress. People with PD should be asked about their pain at clinical consultations and given support with describing pain given the different ways this can present.