Living with Parkinson's disease: Priorities for research suggested by patients
Living with Parkinson's disease: Priorities for research suggested by patients
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DOI：
10.1016/j.parkreldis.2014.04.025
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发表时间：
2014-08-01
影响因子：
4.1
通讯作者：
Abma, T. A.
中科院分区：
文献类型：
--
作者：
Schipper, K.;Dauwerse, L.;Abma, T. A.
目的：描述一项针对帕金森氏病(PD)患者的研究，列出研究的优先顺序，以补充专业人员的研究议程。方法：该研究由研究人员和帕金森病患者或亲属进行。举行了访谈和焦点小组，以从患者的角度制定研究议程。患者填写调查问卷，以确定研究主题的优先顺序。组织了画外音小组会议和与咨询小组的会议，以获得对研究过程的反馈，并审议初步调查结果。最后，组织与利益相关者的对话会，讨论议程并实现共享的研究议程。结果：患者优先考虑18个研究主题。首要任务包括基础研究、药物研究、应对、家庭关系和良好护理。患者要求进行应用型和多学科研究。专业人士和慈善资助机构承认此类研究的重要性，但不认为有能力对此类提议进行评判。患者还要求在此时此地更多地关注与疾病的生活，以补充基础研究。结论：患者的研究议程可以用于将研究与患者的需求相匹配，并使专业人员的临床支持符合患者的意愿。(C)2014爱思唯尔有限公司。保留所有权利。
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 82 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. (C) 2014 Elsevier Ltd. All rights reserved.