Development of a core outcome set to evaluate physical activity Interventions for people living with dementia

Abstract

Research on physical activity interventions for people living with dementia has increased in the last decade. However, literature reviews report limitations in comparing studies due to their heterogeneous selection of outcomes. Therefore, guidance for practice is yet to be established. This thesis aimed to develop a Core Outcome Set – an agreed set of outcomes to be measured, as a minimum, in all effectiveness trials – to evaluate physical activity interventions for people living with dementia, across stages of the disease, intervention settings, in research and practice.

A systematic literature review identified a total of 133 outcomes reported in physical activity interventions for people living with dementia. A qualitative study with key stakeholders (patients, informal carers and professionals) added ten new outcomes to those previously reported. This qualitative study also identified that physical activity was meaningful to patients, not only because of its potential physiological and wellbeing benefits, but also for its impact on identity, perceived roles towards others and connections to the present. A consensus study (modified Delphi survey) was then conducted to reach agreement on the minimum set of core outcomes. Informed by patient and public involvement activities, people living with dementia were included in the consensus process through an innovative card sorting strategy. Consensus was reached on seven outcomes: “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”. However, physical activity may incur side effects and does not happen in isolation from informal carers. A prioritisation exercise was, therefore, completed with professionals and carers, which identified “becoming agitated and confused”, “falling over” and “feeling discomfort and pain” as the most undesirable negative side effects of physical activity for people living with dementia; and, “carer feeling positive and satisfied”; “carer improving wellbeing” and “making lives of carers easier”, as priority outcomes for carers.

This PhD contributes to methodological knowledge of Core Outcome Set development (through the use of mixed methods and an innovative card sorting strategy to engage people living with dementia) and informs our understanding of meaningful outcomes of physical activity for people living with dementia. These outcomes should be measured, as a minimum, in all future trials of physical activity in this population.

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Identifiers

ORCID for Ana Carolina Vieira Goncalves: orcid.org/0000-0003-4055-0894

ORCID for Dinesh Samuel: orcid.org/0000-0003-3610-8032

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