Core Outcome Measures in Effectiveness Trials

Outcomes of physical activity for people living with dementia: qualitative study to inform a Core Outcome Set

General Information

Abstract:
Background The need for a Core Outcome Set to evaluate physical activity interventions for people living with dementia, across stages of disease and intervention settings has been established. This qualitative study precedes the consensus phase of developing this Core Outcome Set and aims to: (i) compare the outcomes identified by patients, carers and professionals to those previously reported in the literature; (ii) and understand why certain outcomes are considered important. Design and methods In-depth semi-structured interviews were conducted with people living with dementia, family carers and professionals (n=29). The outcomes identified in the interviews were mapped to a list of outcomes reported in a recent literature review. An in-depth thematic analysis was conducted to understand the importance of physical activity in dementia care. Results A comprehensive, inductively derived list of 77 outcomes, common across stages of dementia and intervention setting, was put together for the consensus phase of this Core Outcome Set: ten of these were new outcomes generated by this qualitative study. Five themes explained why stakeholders perceived physical activity outcomes as important for people living with dementia: “being well and staying well”, “having a role towards others”, “maintaining identity”, “being connected to the present” and “delivering good quality care”. Conclusion Ten new outcomes of physical activity, not previously reported in recent literature, were identified. Physical activity is considered important to people living with dementia due to its positive impact on multiple health outcomes for both patients and carers.

Authors:
Gonçalves, Ana-Carolina Marques, Alda Samuel, Dinesh Demain, Sara

Publication

Journal:
Physiotherapy
Volume:
Issue:
Pages:
-
Year:
2019
DOI:
Further Study Information

Date:
Funding source(s):
This work was supported by the Universityof Southampton and Solent NHS Trust, through ClinicalDoctoral Research Fellowship to the first author; and Pro-grama Operacional de Competitividade e Internacionalizac¸ão– POCI, through Fundo Europeu de DesenvolvimentoRegional – FEDER (POCI-01-0145-FEDER-007628) andFundac¸ão para a Ciência e Tecnologia under the projectUID/BIM/04501/2013 and UID/BIM/04501/2019 to the sec-ond author; the remaining authors’ time and contributions tothis publication were supported by their affiliations only.

Health Area

Disease Category
Neurology

Disease Name
Dementia

Target Population

Age Range
-

Sex
Either


Nature / type of Intervention
Exercise
Physical

Method(s)

Interview

In-depth semi-structured interviews were conducted with people living with dementia, family carers and professionals(n = 29). The outcomes identified in the interviews were mapped to a list of outcomes reported in a recent literature review. An in-depth thematic analysis was conducted to understand the importance of physical activity in dementia care.


Stakeholders Involved

Clinical experts
Consumers (caregivers)
Consumers (patients)

Study Type

COS for clinical trials or clinical research

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