People living with dementia - what really matters? and why do primary care practitioners need to know?
Research waste takes many forms including poor outcome selection. There is high variability of outcomes and ways to measure them in dementia trials and this impedes the measurement and comparisons of effectiveness. A high proportion of the 850,000 people estimated to be living with dementia in the UK reside at home in their neighbourhoods and communities. Trials of the effectiveness of non-pharmacological health and social care community based interventions are important to increase the quality of evidence in dementia research.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.
1) qualitative interviews/focus groups (including key stakeholders: people living with dementia, care partners, health and social care professionals, researchers and policy makers) and literature review; 2) A modified two-round Delphi survey was used to attain consensus on core outcomes from 288 key stakeholders (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers). The core outcome set was finalised in a consensus meeting with 20 representatives from the key stakeholder groups.3) systematic review of existing outcome tools.
Fifty-four outcomes were initially identified through a process of extracting outcomes from existing trials, key sources and qualitative work with stakeholders in phase 1. In a two-round Delphi survey (round 1 n=288, round 2 n=246 – 85% response rate) with key stakeholders, consensus for inclusion in the COS was attained for 10 outcomes. Three additional outcomes were added at a consensus workshop with key stakeholders (n=20). The final thirteen outcomes in the COS are across four domains – self-managing dementia symptoms, quality of life, friendly neighbourhood and home, independence. Our systematic review (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 that need to be measured as a minimum in trials of community-based health and social interventions for people living with dementia. Funders and researchers will need to shift their focus towards social health outcome measures. Furthermore, this consensus is also capable of informing the content and delivery of health and social programmes. As such, the COS and this study is of interest to researchers, trialists and policy makers including those who plan and commission services. The gaps in outcome measures will also help to set the research agenda for the development of relevant measures in the future.