No abstract

Background: We desired relevant information from patients with Parkinson's disease (PD) and their caregivers for help in planning a long-term support program. Methods: We compared 3 approaches: 1) a standard needs assessment questionnaire, the Camberwell assessment of need in the elderly, 2) an open-ended listing of needs, and 3) participation in a narrative medicine program in which health care professionals were involved. Results: On the questionnaire, patients reported physical needs as the most important while their caregivers were more concerned about psychological needs. The open-ended listings revealed additional needs, particularly access to reliable information about PD and to opportunities to participate in clinical research. The narrative medicine process yielded a number of new insights and proposed solutions, particularly related to the heterogeneity of needs across individuals, the importance of providing hope, and the fact that caregivers expressed that their needs had been largely neglected. Participation in the narrative medicine sessions led to an increase in measured empathy by health care professionals, an improvement in measured depression among PD patients, but a worsening of measured depression among the caregivers. Conclusions: We have identified important needs and potential solutions to be considered in providing long-term support to patients with PD and their caregivers.