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What is important to people living with dementia at home?: A core outcome set for community interventions.

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What is important to people living with dementia at home? A core outcome set for community interventions. / Reilly, Siobhan; Harding, Andrew; Morbey, Hazel et al.
2019. Paper presented at 29th Alzheimer Europe Conference - Making Valuable Connections.

Research output: Contribution to conference - Without ISBN/ISSN Conference paperpeer-review

Harvard

Reilly, S, Harding, A, Morbey, H, Ahmed, F, Swarbrick, C, Leroi, I, Davies, L, Williamson, P & Keady, J 2019, 'What is important to people living with dementia at home? A core outcome set for community interventions.', Paper presented at 29th Alzheimer Europe Conference - Making Valuable Connections, 23/10/19 - 25/10/19. <https://www.alzheimer-europe.org/Conferences/Previous-conferences/2019-The-Hague>

APA

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Reilly S, Harding A, Morbey H, Ahmed F, Swarbrick C, Leroi I et al.. What is important to people living with dementia at home? A core outcome set for community interventions.. 2019. Paper presented at 29th Alzheimer Europe Conference - Making Valuable Connections.

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Bibtex

@conference{44e203c9cbbc46f2bc19632878ceeabd,
title = "What is important to people living with dementia at home?: A core outcome set for community interventions.",
abstract = "BackgroundHigh variability in outcomes in dementia care trials impedes comparisons of effectiveness and makes the interpretation of results difficult. One way for trialists to address these problems is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials. Consultation with people living with dementia regarding the outcomes that matter most would also help to avoid research waste associated with poor outcome selection. 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. Methods We developed a modified two-round 54 item Delphi survey to attain consensus on core outcomes from key stakeholders from the UK. We finalised the core outcome set in a face-to-face consensus meeting in 2018.ResultsOf the 288 participants 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). Ten items met the inclusion criteria for the COS. From 24 items that were discussed by participants attending the consensus meeting a further three items were voted in. Respondents living with dementia who rated these 13 outcomes as very important in the second round of the Delphi ranged from 50% to 95%. ConclusionsProviding there are adequate measures, the 13 outcome items should be included and reported in trials on the effectiveness of non-pharmacological interventions and community-based interventions for people with dementia living at home and in their neighbourhood. An additional abstract reports a systematic review of existing outcome measurement instruments so that we can recommend {\textquoteleft}how to measure{\textquoteright} the 13 outcome items.",
author = "Siobhan Reilly and Andrew Harding and Hazel Morbey and Faraz Ahmed and Caroline Swarbrick and Ira Leroi and Linda Davies and Paula Williamson and John Keady",
year = "2019",
month = oct,
day = "25",
language = "English",
note = "29th Alzheimer Europe Conference - Making Valuable Connections ; Conference date: 23-10-2019 Through 25-10-2019",
url = "https://www.alzheimer-europe.org/Conferences/Previous-conferences/2019-The-Hague",

}

RIS

TY - CONF

T1 - What is important to people living with dementia at home?

T2 - 29th Alzheimer Europe Conference - Making Valuable Connections

AU - Reilly, Siobhan

AU - Harding, Andrew

AU - Morbey, Hazel

AU - Ahmed, Faraz

AU - Swarbrick, Caroline

AU - Leroi, Ira

AU - Davies, Linda

AU - Williamson, Paula

AU - Keady, John

PY - 2019/10/25

Y1 - 2019/10/25

N2 - BackgroundHigh variability in outcomes in dementia care trials impedes comparisons of effectiveness and makes the interpretation of results difficult. One way for trialists to address these problems is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials. Consultation with people living with dementia regarding the outcomes that matter most would also help to avoid research waste associated with poor outcome selection. 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. Methods We developed a modified two-round 54 item Delphi survey to attain consensus on core outcomes from key stakeholders from the UK. We finalised the core outcome set in a face-to-face consensus meeting in 2018.ResultsOf the 288 participants 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). Ten items met the inclusion criteria for the COS. From 24 items that were discussed by participants attending the consensus meeting a further three items were voted in. Respondents living with dementia who rated these 13 outcomes as very important in the second round of the Delphi ranged from 50% to 95%. ConclusionsProviding there are adequate measures, the 13 outcome items should be included and reported in trials on the effectiveness of non-pharmacological interventions and community-based interventions for people with dementia living at home and in their neighbourhood. An additional abstract reports a systematic review of existing outcome measurement instruments so that we can recommend ‘how to measure’ the 13 outcome items.

AB - BackgroundHigh variability in outcomes in dementia care trials impedes comparisons of effectiveness and makes the interpretation of results difficult. One way for trialists to address these problems is to use and report a core outcome set (COS) - a list of core outcomes which should be measured and reported as a minimum across all relevant effectiveness trials. Consultation with people living with dementia regarding the outcomes that matter most would also help to avoid research waste associated with poor outcome selection. 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. Methods We developed a modified two-round 54 item Delphi survey to attain consensus on core outcomes from key stakeholders from the UK. We finalised the core outcome set in a face-to-face consensus meeting in 2018.ResultsOf the 288 participants 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). Ten items met the inclusion criteria for the COS. From 24 items that were discussed by participants attending the consensus meeting a further three items were voted in. Respondents living with dementia who rated these 13 outcomes as very important in the second round of the Delphi ranged from 50% to 95%. ConclusionsProviding there are adequate measures, the 13 outcome items should be included and reported in trials on the effectiveness of non-pharmacological interventions and community-based interventions for people with dementia living at home and in their neighbourhood. An additional abstract reports a systematic review of existing outcome measurement instruments so that we can recommend ‘how to measure’ the 13 outcome items.

M3 - Conference paper

Y2 - 23 October 2019 through 25 October 2019

ER -