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

Abstract

Background/Aims: Evidence on the benefits of physical activity for people with dementia remains disparate, mainly due to the selection of heterogeneous outcomes and measurement tools. This delays clear and specific recommendations for research and clinical practice. The development of a core outcome set can contribute to overcoming this heterogeneity. Methods: This is a study protocol for the development of a core outcome set applicable to physical activity interventions in any setting for people with dementia, across all stages of disease progression. This is a mixed methods study divided into four phases: 1) a literature review to identify outcomes used in previous literature; 2) a qualitative study to explore valued outcomes from the perspectives of different stakeholders; 3) a Delphi survey and consensus meeting to reach a minimum set of outcomes; and 4) a literature review to link the agreed core outcomes to the most appropriate measurement tool. Conclusions: A core outcome set in this field has the potential to allow fast-tracking recommendations for application in research and clinical practice. However, dissemination activities are required to encourage researchers to implement the core outcome set.

Physical activity for people living with dementia: carer outcomes and side effects from the perspectives of professionals and family carers

“…The main Delphi survey was completed via online and paper surveys for carers and professionals, while people living with dementia completed the same Delphi using an innovative face to face card sorting strategy. A more detailed methodological description of this Delphi survey is available elsewhere [ 13 , 14 ]. It was not considered possible to include negative side effects and carer outcomes in the Delphi survey as this would increase the length of the survey and limit participation of people living with dementia.…”

The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable

“…Interested individuals will be invited to respond to an advert or invitation by contacting the researchers. In addition, all participants from stage one (including patients and carers) will be invited to participate, in line with other Delphi studies (Gonçalves et al, ). On response, socio‐demographic information will be collected.…”

“…Based on findings from stage one, a Delphi process with three phases (survey tool generation followed by two surveys) will be conducted to explore and map consensus and disparity regarding concepts and outcomes of SMS, based on our previous experience of Delphi exercises (Gonçalves, Marques, Demain, & Samuel, ). Identifying outcomes relevant to a range of stakeholders (patients, carers, professionals who deliver services, commissioners and policy representatives) will inform design and evaluation of self‐management interventions, and potentially improve the uptake and enactment of self‐management.…”

“…Based on findings from stage one, a Delphi process with three phases (survey tool generation followed by two surveys) will be conducted to explore and map consensus and disparity regarding concepts and outcomes of SMS, based on our previous experience of Delphi exercises (Gonçalves, Marques, Demain, & Samuel, 2018).…”

“…In addition, all participants from stage one (including patients and carers) will be invited to participate, in line with other Delphi studies (Gonçalves et al, 2018). On response, socio-demographic information will be collected.…”