Neighbourhoods & Dementia Programme Study:Core Outcome Set for people living with dementia

Background: The emergence of core outcome sets (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials - addresses the lack of consistency in outcomes and measurement instruments that are used across studies and subsequent obstruction of robust meta-analysis and comparisons for effectiveness (1, 2). For example, in the field of dementia, a recent review has found over forty quality of life measurement instruments (3). The objective of work programme 3 of the wider Neighbourhoods and Dementia programme (funded by the ESRC/NIHR under key commitment 12 of the first Prime Minister’s Challenge on dementia), is to develop a COS for non-pharmacological health and social care community-based interventions for people living with dementia. The scope and focus of this COS reflects the widely acknowledged need to further develop community-based health and social programmes for people living with dementia (4, 5). This study addresses to research questions: 1) Which outcomes should be measured from the perspective of people with dementia living at home, care partners, health and social care professionals, researchers, policy makers/ service commissioners? 2) How should such outcomes be measured? (6): Method: We answer these questions through the following methods: 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 Delphi survey (with key stakeholders and co-designed with people living with dementia (7)) and consensus workshop and 3) systematic review of existing outcome tools. Results: This presentation will briefly highlight how we answered the first research question and then detail the findings relating to the second research question Which outcomes should be measured? 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. How should such outcomes be measured? We will then describe 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. Implications: This study has developed a set of outcomes as a tool-kit that can be routinely used in the evaluation of non-pharmacological health and social support for people with dementia living at home. 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. Furthermore, this consensus on what outcomes are regarded as core 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