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What is important to people with dementia living at home?: A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions

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What is important to people with dementia living at home? A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions. / Reilly, Siobhan; Harding, Andrew; Morbey, Hazel; Ahmed, Faraz; Williamson, Paula; Swarbrick, Caroline; Leroi, Iracema; Davies, Linda; Reeves, David; Holland, Fiona; Hann, Mark; Keady, John.

In: Age and Ageing, Vol. 49, No. 4, 01.07.2020, p. 664-671.

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Reilly, Siobhan ; Harding, Andrew ; Morbey, Hazel ; Ahmed, Faraz ; Williamson, Paula ; Swarbrick, Caroline ; Leroi, Iracema ; Davies, Linda ; Reeves, David ; Holland, Fiona ; Hann, Mark ; Keady, John. / What is important to people with dementia living at home? A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions. In: Age and Ageing. 2020 ; Vol. 49, No. 4. pp. 664-671.

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@article{068e78a009db472d953cc4788e6240ff,
title = "What is important to people with dementia living at home?: A set of core outcome items for evaluating non-pharmacological community-based health and social care interventions",
abstract = "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. ",
keywords = "core outcome set, dementia, non-pharmacological, psychosocial, outcomes, older people",
author = "Siobhan Reilly and Andrew Harding and Hazel Morbey and Faraz Ahmed and Paula Williamson and Caroline Swarbrick and Iracema Leroi and Linda Davies and David Reeves and Fiona Holland and Mark Hann and John Keady",
year = "2020",
month = jul
day = "1",
doi = "10.1093/ageing/afaa015",
language = "English",
volume = "49",
pages = "664--671",
journal = "Age and Ageing",
issn = "0002-0729",
publisher = "OXFORD UNIV PRESS",
number = "4",

}

RIS

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 -