Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
Contributions of Persons Living With Dementia to Scientific Research Meetings. Results From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers
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DOI：
10.1016/j.jagp.2019.10.014
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发表时间：
2020-04-01
影响因子：
7.2
通讯作者：
Epstein-Lubow, Gary
中科院分区：
文献类型：
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作者：
Frank, Lori;Shubeck, Emily;Epstein-Lubow, Gary
目的：在美国，将患者纳入研究活动的情况有所增加，但没有将认知障碍患者纳入研究活动的指导方针。为支持第一届全国老年痴呆症患者及其护理人员护理、服务和支持研究峰会而成立的老年痴呆症患者利益相关者小组的经验，为此类参与重大研究会议的可行性提供了测试，并为了解该小组的具体贡献提供了机会。研究方法：艾滋病毒/艾滋病患者利益攸关方小组由首脑会议共同主席组成，是负责为首脑会议议程和会议建议提供投入的六个利益攸关方小组之一。成员是通过临床医生/研究人员与潜在成员的个人知识招募。首脑会议之后，小组成员召开会议，审查小组对首脑会议议程、发言者名单和首脑会议研究建议的贡献。结果：艾滋病患者小组影响了首脑会议议程的内容，一些小组成员应邀通过首脑会议发言作出贡献。该小组影响了首脑会议的成果：在提出的58项研究建议中，有30项表达了艾滋病毒/艾滋病患者提出的想法。结论：事实证明，艾滋病患者利益攸关方小组的实施是可行的，并影响了一次关于痴呆症的重要国家研究会议的议程和成果。
Objective: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. Methods: The PLWD Stakeholder Group was formed by Summit cochairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. Results: The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. Conclusions: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.