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What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions
Reilly, Siobhan T. Harding, A.J.E. Morbey, H. Ahmed, F. Williamson, P.R. Swarbrick, C. Leroi, I. Davies, L. Reeves, D. Holland, F.
Reilly, Siobhan T.
Harding, A.J.E.
Morbey, H.
Ahmed, F.
Williamson, P.R.
Swarbrick, C.
Leroi, I.
Davies, L.
Reeves, D.
Holland, F.
Publication Date
2020-07
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© 2020 The Author(s). This is an Open Access article distributed under the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/)
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openAccess
Accepted for publication
2019-12-16
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Abstract
Objectives: Inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between
trials. The key aim of this study is 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.
Method: We used a mixed-methods research design, including substantive qualitative research with five key stakeholders
groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round
54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting
in 2018.
Results: Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and
social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants
attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items.
Conclusion: We identified 13 outcome items which are considered core; many relate to social health. Providing there are
adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more
useful. The items will provide commissioners and service planners with information on what types of interventions are most
likely to be valued highly by people living with dementia.
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Published version
Citation
Reilly ST, Harding AJE, Morbey H et al (2020) What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions. Age and Ageing. 49(4): 664-671.
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Article