Living with Parkinson's disease: priorities for research suggested by patients.

ABSTRACT

PURPOSE: To describe a study in which patients with Parkinson's disease (PD) were engaged to list priorities for research to complement the professionals' research agenda. METHOD: The study was conducted by researchers and people with PD or relatives. Interviews and focus groups were held to develop a research agenda from patients' perspectives. A questionnaire was completed by patients to prioritize the research topics. Voiceover group meetings and meetings with the advisory group were organized to obtain feedback on the research process and to deliberate the preliminary findings. Finally, dialog meetings were organized with stakeholders to discuss the agenda and to achieve a shared research agenda. RESULTS: Patients prioritized 18 research themes. Top priorities included fundamental research, research on medication, coping, family & relations and good care. Patients asked for applied and multidisciplinary research. Professionals and charitable funding bodies acknowledged the importance of such research but did not feel capable of judging such proposals. Patients furthermore asked for more attention to be paid to living with the illness in the here-and-now to complement fundamental research. CONCLUSIONS: The patients' research agenda can be used to match research with patients' needs and to adapt the clinical support of professionals to patients' wishes.