What is important to people living with dementia?: the "long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions
What is important to people living with dementia?: the "long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions
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DOI：
10.1186/s12877-019-1103-5
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发表时间：
2019-03-27
期刊：
影响因子：
4.1
通讯作者：
Reilly, Siobhan T.
中科院分区：
文献类型：
--
作者：
Harding, Andrew J. E.;Morbey, Hazel;Reilly, Siobhan T.
核心结果集（COS）根据其对关键利益相关者的重要性对结果进行优先排序，减少报告偏倚并增加研究之间的可比性。COS研究的第一阶段是形成一个长的结果列表。然后，关键利益攸关方决定其重要性。COS报告被描述为次优，第一阶段往往报告不足。我们的目标是开发一个长列表的非药物干预措施的结果项目痴呆症的人住在home.MethodsThree迭代阶段进行。首先，痴呆症患者、护理伙伴、卫生和社会护理专业人员、政策制定者和研究人员（n=55）参加了访谈或焦点小组，并被问及哪些结果是重要的。其次，现有的痴呆症试验是从ALOIS数据库中确定的。1009项药理学研究中有248项符合纳入标准。主要和次要结果是从50%的随机样本（n=124）中提取的，沿着8篇关键综述/定性论文和38份政策文件。第三，提取的成果项目转化为现有的定性框架，并映射到域。研究小组删除了重复的领域，并完善了长名单'在八workshops.ResultsOne一百七十个结果项目中提取的定性数据和文献。170个结果项目被合并到54个领域（自我管理痴呆症症状，生活质量，友好的邻里和家庭，独立性）。54个结果项目虽然本身是一个有用的资源，但将在经过修改的德尔菲调查和共识会议中进一步提炼，以确定核心结果。
BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a long-list' of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n=55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n=124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the long-list' in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).ConclusionsThis paper presents a transparent blueprint for long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.