Dementia Core Outcome Set Study

  • Research type

    Research Study

  • Full title

    Development of a core outcome set for people with dementia living at home in their neighbourhoods and communities

  • IRAS ID

    169558

  • Contact name

    Siobhan Reilly

  • Contact email

    s.reilly@lancaster.ac.uk

  • Duration of Study in the UK

    4 years, 5 months, 28 days

  • Research summary

    This core outcome study is one of eight work streams within the national N&D (Neighbourhoods & Dementia) Programme. The key aim of this study is to establish an agreed standardised set of outcomes as a core outcome set (COS) representing the minimum set of outcomes that should be measured and reported when evaluating health and social care interventions for people with dementia living at home in the neighbourhood and community. We will identify “outcomes” from the perspective of people with dementia and their care partners, health professionals, researchers and policy makers/commissioners, as existing outcome measures may not include outcomes that are important and meaningful to people with dementia, whose perspectives are often not represented in current studies. A search of the Core Outcome Measures in Effectiveness Trials (COMET) database indicated no core outcome set is available for use in health and social interventions targeting at people with dementia living at home in their neighbourhoods and communities.

    The two research questions are:
    1) Which outcomes should be measured from the perspective of people with dementia living at homes, care partners, health professionals, researchers and policy makers/commissioners?
    2) How should such outcomes be measured?

    To address these research questions, the following objectives are proposed:
    1. To identify a list of outcomes for health and social care interventions from the perspectives of people with dementia living at homes, care partners, healthcare professionals, researchers, and policy makers/commissioners.
    2. To identify outcomes reported in existing intervention studies.
    3. To use the Delphi method to reach consensus amongst people with dementia, care partners, health care professionals, researchers and policy makers on potential outcomes identified by key stakeholders and reported in existing neighbourhood and community-based intervention studies.
    4. To assess the properties of agreed outcomes included in the core outcome set.
    5. To assess the preference and priorities of stakeholders for the dementia core outcome identified.

  • REC name

    Wales REC 5

  • REC reference

    15/WA/0260

  • Date of REC Opinion

    17 Jul 2015

  • REC opinion

    Favourable Opinion