Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions.
Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions.
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DOI：
10.1186/s13063-018-2584-9
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发表时间：
2018-04-24
期刊：
影响因子：
2.5
通讯作者：
Reilly S
中科院分区：
文献类型：
--
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
该研究的主要目的是建立一个商定的标准化核心结果集（COS），用于评估生活在家中的痴呆症患者的非药物健康和社会护理干预措施。将进行焦点小组和与关键利益相关者群体（痴呆症患者，护理合作伙伴，相关卫生和社会护理专业人员，研究人员和政策制定者）的访谈以及文献综述，以建立一个长长的成果清单。将对主要利益攸关方群体进行两轮德尔菲调查。德尔菲调查和参与过程的声明将通过与痴呆症患者和护理伙伴的实质性成员参与来制定和通报。我们将与主要参与团体举行共识会议，讨论主要研究结果，并敲定COS。将进行系统的文献审查，以评估工具和手段的特性，评估COS的组成部分。测量属性，有效性和可靠性将使用基于健康测量选择标准（COSMIN）和COMET指南进行评估。一项声明的偏好调查将了解关键利益攸关方对在COS中确定为重要的衡量结果的偏好。借鉴的指导和方法的有效性试验（COMET）的核心成果指标，本研究采用了四阶段混合方法设计：据我们所知，本研究是第一个使用修改后的德尔菲过程，涉及老年痴呆症患者作为一个参与组。虽然这项研究仅限于在联合王国收集数据，但研究人员使用COS将提高评价非药物和社区干预措施的研究的可比性。该研究在COMET倡议上注册，2014年在comet-initiative. org注册。本文的在线版本（10.1186/s13063-018-2584-9）包含补充材料，可供授权用户使用。
The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions. The study is registered on the COMET initiative, registered in 2014 at comet-initiative.org. The online version of this article (10.1186/s13063-018-2584-9) contains supplementary material, which is available to authorized users.
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