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Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - What is important to people with dementia living at home?
T2 - A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions
AU - Reilly, Siobhan
AU - Harding, Andrew
AU - Morbey, Hazel
AU - Ahmed, Faraz
AU - Williamson, Paula
AU - Swarbrick, Caroline
AU - Leroi, Iracema
AU - Davies, Linda
AU - Reeves, David
AU - Holland, Fiona
AU - Hann, Mark
AU - Keady, John
PY - 2020/7/1
Y1 - 2020/7/1
N2 - ObjectivesInconsistency in outcome measurement in dementia care trials impedes 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. ResultsOf 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. ConclusionWe 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 that are most likely to be valued highly by people living with dementia.
AB - ObjectivesInconsistency in outcome measurement in dementia care trials impedes 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. ResultsOf 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. ConclusionWe 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 that are most likely to be valued highly by people living with dementia.
KW - core outcome set
KW - dementia
KW - non-pharmacological
KW - psychosocial
KW - outcomes
KW - older people
U2 - 10.1093/ageing/afaa015
DO - 10.1093/ageing/afaa015
M3 - Journal article
VL - 49
SP - 664
EP - 671
JO - Age and Ageing
JF - Age and Ageing
SN - 0002-0729
IS - 4
ER -