Unmet Needs of Patients with Parkinson's Disease: Interview Survey of Patients and Caregivers

We performed a 20-item questionnaire-based interview of 132 patients with Parkinson's disease (PD): 81 patients with Hoehn & Yahr (H&Y) stage I - III PD, and 51 caregivers of patients with H&Y stage IV - V PD, to evaluate patient and caregiver satisfaction with PD treatment. The survey revealed that PD patients often experience non-motor symptoms, which are not adequately alleviated by antiparkinsonian agents. Furthermore, PD patients want their physicians to listen to them and take their concerns seriously, to explain their disease comprehensively, and to provide the latest information on PD and its treatment. Both patients and caregivers agreed on anxiety toward the future, communication difficulties, and their different movement pace; however, there were differences in their relative perceptions of various aspects of daily care. The evaluation revealed that PD patients have unmet needs in their treatment and standards of care. Areas for future improvement as highlighted in this study include: the development of better treatment for motor symptoms, the development of new treatments for non-motor symptoms and improved two-way communication between patient and physician.