What is important to people living with dementia at home?:A core outcome set for community interventions.

Background High variability in outcomes in dementia care trials impedes comparisons of effectiveness and makes the interpretation of results difficult. One way for trialists to address these problems is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials. Consultation with people living with dementia regarding the outcomes that matter most would also help to avoid research waste associated with poor outcome selection. 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. Methods We developed a modified two-round 54 item Delphi survey to attain consensus on core outcomes from key stakeholders from the UK. We finalised the core outcome set in a face-to-face consensus meeting in 2018. Results Of the 288 participants 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). Ten items met the inclusion criteria for the COS. From 24 items that were discussed by participants attending the consensus meeting a further three items were voted in. Respondents living with dementia who rated these 13 outcomes as very important in the second round of the Delphi ranged from 50% to 95%. Conclusions Providing there are adequate measures, the 13 outcome items should be included and reported in trials on the effectiveness of non-pharmacological interventions and community-based interventions for people with dementia living at home and in their neighbourhood. An additional abstract reports a systematic review of existing outcome measurement instruments so that we can recommend ‘how to measure’ the 13 outcome items