What really matters? : Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities to increase the quality of evidence in dementia research

Reilly, Siobhan and Brady, Rita and Harding, Andrew and Morbey, Hazel and Williamson, Paula and Keady, John (2019) What really matters? : Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities to increase the quality of evidence in dementia research. In: Faculty for the Psychology of Older People National Conference - Beyond the stereotypes of ageing: Tales of the unexpected, 2019-07-01 - 2019-07-02.

Abstract

There is high variability of outcomes and ways to measure them in dementia trials and this impedes the measurement and comparisons of effectiveness. To date, previous consensus exercises to identify important outcomes have not meaningfully involved people living with dementia relative to professional groups. We designed a study 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 in their neighbourhood. There were three phases to our study: 1) Qualitative interviews/ focus groups and literature review. 2) A two-round modified Delphi survey with key stakeholders (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers). Consensus for inclusion in the COS was attained for 10 outcomes. The core outcome set was finalised in a consensus meeting with 20 representatives from the key stakeholder groups. Three additional outcomes were added. The final thirteen outcomes in the COS are across four domains – friendly neighbourhood and home, independence, quality of life and self-managing dementia symptoms. 3) A systematic review of existing outcome tools (including an assessment of psychometric properties) which seeks to identify existing outcome measures that map onto the 13 outcomes identified in the COS, is currently work in progress. We recommend thirteen outcomes in the COS; these need to be measured as a minimum in trials of communitybased health and social interventions for people living with dementia at home in their neighbourhoods and communities.