Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.
Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.
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公众参与痴呆症研究：欧洲痴呆症患者对路线图项目的贡献。
DOI：
10.1111/hex.13246
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发表时间：
2021-06
期刊：
影响因子：
--
通讯作者：
Sudlow C
中科院分区：
文献类型：
--
作者：
Diaz A;Gove D;Nelson M;Smith M;Tochel C;Bintener C;Ly A;Bexelius C;Gustavsson A;Georges J;Gallacher J;Sudlow C
痴呆症的后果包括记忆丧失、语言障碍、生活质量下降和人格改变。研究表明，痴呆症临床试验选择的结果可能对受影响的人来说不是最重要的。“为更好的护理提供阿尔茨海默病谱的真实的世界成果：多模态数据访问平台”（ROADMAP）项目的目标之一是从痴呆症患者及其护理人员的角度确定重要成果。我们回顾了ROADMAP的公众参与如何塑造该计划、影响研究过程并为痴呆症患者发声。欧洲痴呆症患者工作组（EWGPWD）应邀参加。与痴呆症患者和护理人员进行了面对面的咨询，并提供了关于ROADMAP活动的预先信息。调查内容，布局和可访问性的建设性批评，因为是对术语和疾病进展的关键概念的看法和观点。工作组在调查的可获得性和可接受性方面作出了重大改进。他们促进了对疾病进展概念的更好理解，以及研究人员如何测量和解释发现。他们通过真实的世界的例子有效地表达了困难的概念。EWGPWD在ROADMAP中的作用至关重要，其影响具有很大的影响力。从设计阶段的参与有助于塑造该计划的精神，并最终其意义。痴呆症患者及其护理人员通过结构化协商参与，并应邀就项目材料、方法以及对术语和相关概念的见解提供反馈。
Dementia outcomes include memory loss, language impairment, reduced quality of life and personality changes. Research suggests that outcomes selected for dementia clinical trials might not be the most important to people affected. One of the goals of the ‘Real world Outcomes across the Alzheimer's Disease spectrum for better care: Multi‐modal data Access Platform’ (ROADMAP) project was to identify important outcomes from the perspective of people with dementia and their caregivers. We review how ROADMAP's Public Involvement shaped the programme, impacted the research process and gave voice to people affected by dementia. The European Working Group of People with Dementia (EWGPWD) were invited to participate. In‐person consultations were held with people with dementia and caregivers, with advance information provided on ROADMAP activities. Constructive criticism of survey content, layout and accessibility was sought, as were views and perspectives on terminology and key concepts around disease progression. The working group provided significant improvements to survey accessibility and acceptability. They promoted better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings. They effectively expressed difficult concepts through real‐world examples. The role of the EWGPWD in ROADMAP was crucial, and its impact was highly influential. Involvement from the design stage helped shape the ethos of the programme and ultimately its meaningfulness. People with dementia and their carers were involved through structured consultations and invited to provide feedback on project materials, methods and insight into terminology and relevant concepts.
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DOI：
10.1002/art.21450
发表时间：
2005-10-15
期刊：
ARTHRITIS & RHEUMATISM-ARTHRITIS CARE & RESEARCH
影响因子：
--
作者：
Hewlett, S;Cockshott, Z;Hehir, M
通讯作者：
Hehir, M
影响因子：
4.1
作者：
Harding, Andrew J. E.;Morbey, Hazel;Reilly, Siobhan T.
通讯作者：
Reilly, Siobhan T.
影响因子：
2.4
作者：
Edelman N;Barron D
通讯作者：
Barron D
影响因子：
14
作者：
Janssen, Olin;Vos, Stephanie J. B.;Diaz, Carlos
通讯作者：
Diaz, Carlos
影响因子：
2.5
作者：
Harding AJE;Morbey H;Ahmed F;Opdebeeck C;Wang YY;Williamson P;Swarbrick C;Leroi I;Challis D;Davies L;Reeves D;Holland F;Hann M;Hellström I;Hydén LC;Burns A;Keady J;Reilly S
通讯作者：
Reilly S