Abstract
Objectivesinconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home.Methodwe used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018.Resultsof the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items.Conclusionwe identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia.Trial registrationThe study is registered on the COMET initiative database.
Highlights
Dementia interventions and outcomes continue to be central pillars of dementia strategies and policies at global and national levels
Thirteen outcomes items were identified as core; these are what people value in order to live well with dementia
It is likely that the relative lack of importance attributed to cognition in the core outcome set (COS) reflect the extent to which the COS has been influenced by key stakeholders, including people living with dementia and less so by professional groups such as researchers and health & social care professionals
Summary
Dementia interventions and outcomes continue to be central pillars of dementia strategies and policies at global and national levels. The researchers conclude that including outcomes that people with lived experience value “...could help ensure that successful treatments or evaluation of the quality of care is better focused on aspects of Alzheimer’s Disease most important to the people affected by it.” [4] This underlines the widely held view that dementia care research is a field in which the quality of evidence needs to be stronger [2, 3]. Many dementia-related systematic reviews and clinical guidelines highlight the high degree of variation in outcomes and measures used in existing trials of non-pharmacological health and social care community based interventions for people living with dementia [5,6,7,8] This variation reduces the quality, robustness and generalisability of the existing evidence and a lack of consistency in outcomes leads to heterogeneity and reporting biases [9, 10] contributing to research waste [11]. Comparisons across studies for effectiveness is obstructed making the interpretation of results, synthesis of evidence and meta-analysis difficult [12]
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