Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

Harding, Andrew J.E.; Morbey, Hazel; Ahmed, Faraz; Opdebeeck, Carol; Wang, Ying Ying; Williamson, Paula; Swarbrick, Caroline; Leroi, Iracema; Challis, David; Davies, Linda; Reeves, David; Holland, Fiona; Hann, Mark; Hellström, Ingrid; Hydén, Lars Christer; Burns, Alistair; Keady, John; Reilly, Siobhan

Abstract

© 2018 The Author(s). Background: The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Methods/design: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. Discussion: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions. Trial registration: The study is registered on the COMET initiative, registered in 2014 at comet-initiative.org.

• Journal Article Type: Article
• Acceptance Date: Mar 13, 2018
• Online Publication Date: Apr 24, 2018
• Publication Date: Apr 24, 2018
• Deposit Date: Jun 20, 2020
• Publicly Available Date: Jun 26, 2020
• Journal: Trials
• Electronic ISSN: 1745-6215
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 19
• Issue: 1
• Article Number: 247
• DOI: https://doi.org/10.1186/s13063-018-2584-9
• Public URL: https://nottingham-repository.worktribe.com/output/3750707
• Publisher URL: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2584-9