Parkinson’s disease patients’ subjective descriptions of characteristics of chronic pain, sleeping patterns and health-related quality of life

OBJECTIVE: Nonmotor symptoms are common in Parkinson’s disease (PD). Health-related quality of life (HRQoL) is negatively affected by different factors, of which pain and sleep disturbances are important contributors. This study was performed to evaluate and describe subjective experiences of pain, sleeping patterns, and HRQoL in a cohort of PD patients with chronic pain. METHODS: A total of 45 participants with established PD for more than 2 years, and PD-related pain for the preceding three months, were recruited from three sites in Sweden. Data regarding time point for onset, duration and degree of pain parameters, body localization of pain, external influences, and treatments were obtained. HRQoL was evaluated with the Short Form-36(®) Health Survey, and sleeping patterns were registered with the Parkinson’s disease Sleep Scale, both completed along with a questionnaire. RESULTS: In one-third of participants, pain preceded the PD diagnosis. Median pain score measured with a visual analog scale was 6.6 and 5.9 (for females and males, respectively) the week before the study. In almost half of the participants, pain was present during all their waking hours. Significantly more females described their pain as troublesome, while more males described their pain as irritating. Feelings of numbness and creeping sensations at night were strongly associated with the maximal visual analog scale scores. Polypharmacy was common; 89% used medication for anxiety/insomnia, and 18% used antidepressants. Only one-third of patients who reported pain relief with analgesics had these prescribed on their drug lists. Sleep was characterized by frequent awakenings. Urinary urgency and restless legs were frequently reported as troublesome. Patients rated HRQoL as significantly worse in all items compared with a healthy reference population matched for age and sex. CONCLUSIONS: Experiences of chronic PD-related pain are complex; there is substantial sleep fragmentation and negative impact on HRQoL.