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A core outcome set to evaluate physical activity interventions for people living with dementia

A core outcome set to evaluate physical activity interventions for people living with dementia
A core outcome set to evaluate physical activity interventions for people living with dementia

Background and Objectives: A core outcome set (COS) to evaluate physical activity (PA) interventions for people living with dementia is needed, as the development of guidelines is currently limited by important heterogeneity in this field of research. Development of COS often includes Delphi surveys, but people living with dementia are often excluded. This study aimed to reach consensus on this COS using a modified Delphi survey to enable the participation of people living with dementia. Research Design and Methods: Two stakeholders groups took part in a Delphi survey (Group 1: people living with dementia and family caregivers; Group 2: professionals from different backgrounds, including physiotherapists, occupational therapists, and researchers). Caregivers and professionals completed the survey remotely. Participants living with dementia took part face-to-face, using a card sorting strategy. The consensus process was finalized with a consensus meeting. Results: Ninety-five participants of both groups completed the modified Delphi. Of those, 11 attended the consensus meeting. The card sorting strategy was successful at including people living with dementia. Seven outcomes reached consensus: preventing falls; doing what you can do; staying healthy and fit; walking better, being able to stand up and climb stairs; feeling brighter; enjoying the moment; and, feeling useful and having a purpose. Discussion and Implications: Robust and innovative methodological strategies were used to reach a consensus on a COS (what to measure) to evaluate PA for people living with dementia. Future work will focus on the selection of the most appropriate tools to measure these outcomes (how to measure).

Alzheimer's disease, Delphi, Exercise, What to measure
0016-9013
682–692
Goncalves, Ana Carolina, Vieira
ecb4863c-186b-4ecd-abac-3745fa5fcf30
Samuel, Dinesh
03b00738-9b9c-4c0a-a85a-cf43fc0932fc
Ramsay, Mary
69ca3a9b-df7c-4ddb-9527-8c94adbf3880
Demain, Sara
09b1124d-750a-4eb1-90c7-91f5f222fc31
Marques, Alda
adcfe8d5-518a-4079-902a-130ebc68d338
Goncalves, Ana Carolina, Vieira
ecb4863c-186b-4ecd-abac-3745fa5fcf30
Samuel, Dinesh
03b00738-9b9c-4c0a-a85a-cf43fc0932fc
Ramsay, Mary
69ca3a9b-df7c-4ddb-9527-8c94adbf3880
Demain, Sara
09b1124d-750a-4eb1-90c7-91f5f222fc31
Marques, Alda
adcfe8d5-518a-4079-902a-130ebc68d338

Goncalves, Ana Carolina, Vieira, Samuel, Dinesh, Ramsay, Mary, Demain, Sara and Marques, Alda (2020) A core outcome set to evaluate physical activity interventions for people living with dementia. The Gerontologist, 60 (4), 682–692. (doi:10.1093/geront/gnz100).

Record type: Article

Abstract

Background and Objectives: A core outcome set (COS) to evaluate physical activity (PA) interventions for people living with dementia is needed, as the development of guidelines is currently limited by important heterogeneity in this field of research. Development of COS often includes Delphi surveys, but people living with dementia are often excluded. This study aimed to reach consensus on this COS using a modified Delphi survey to enable the participation of people living with dementia. Research Design and Methods: Two stakeholders groups took part in a Delphi survey (Group 1: people living with dementia and family caregivers; Group 2: professionals from different backgrounds, including physiotherapists, occupational therapists, and researchers). Caregivers and professionals completed the survey remotely. Participants living with dementia took part face-to-face, using a card sorting strategy. The consensus process was finalized with a consensus meeting. Results: Ninety-five participants of both groups completed the modified Delphi. Of those, 11 attended the consensus meeting. The card sorting strategy was successful at including people living with dementia. Seven outcomes reached consensus: preventing falls; doing what you can do; staying healthy and fit; walking better, being able to stand up and climb stairs; feeling brighter; enjoying the moment; and, feeling useful and having a purpose. Discussion and Implications: Robust and innovative methodological strategies were used to reach a consensus on a COS (what to measure) to evaluate PA for people living with dementia. Future work will focus on the selection of the most appropriate tools to measure these outcomes (how to measure).

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A Core Outcome Set to evaluate physical activity interventions for people living with dementia - Accepted Manuscript
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Accepted/In Press date: 25 June 2019
e-pub ahead of print date: 27 July 2019
Published date: June 2020
Additional Information: Funding Information: This work was supported by the University of Southampton and Solent NHS Trust, through Clinical Doctoral Research Fellowship to the first author; and Programa Operacional de Competitividade e Internacionalização – POCI, through Fundo Europeu de Desenvolvimento Regional - FEDER (POCI-01-0145-FEDER-007628) and Fundação para a Ciência e Tecnologia under the projects UID/BIM/04501/2013 and UID/BIM/04501/2019 to the last author; the remaining authors’ time and contributions to this publication did not receive particular funding and were supported by their affiliations, when applicable. Publisher Copyright: © The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved.
Keywords: Alzheimer's disease, Delphi, Exercise, What to measure

Identifiers

Local EPrints ID: 432208
URI: http://eprints.soton.ac.uk/id/eprint/432208
ISSN: 0016-9013
PURE UUID: eb93abbc-e36b-4971-8e56-df9dff122cef
ORCID for Ana Carolina, Vieira Goncalves: ORCID iD orcid.org/0000-0003-4055-0894
ORCID for Dinesh Samuel: ORCID iD orcid.org/0000-0003-3610-8032

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Date deposited: 04 Jul 2019 16:30
Last modified: 17 Apr 2024 01:39

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Contributors

Author: Ana Carolina, Vieira Goncalves ORCID iD
Author: Dinesh Samuel ORCID iD
Author: Mary Ramsay
Author: Sara Demain
Author: Alda Marques

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