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Abstract
Background: Patient and public involvement and engagement and consumer feedback are encouraged by community leaders, policymakers, and funders to address health problems. Patient and consumer feedback is a critical step in scaling research applications among persons with multiple sclerosis (MS). This is important as there are physical activity guidelines for exercise in MS that have important translational utility for research, yet participation in exercise research is low among persons with MS. This may be explained by minimal engagement of persons with MS in research design. It is important to understand experiences in exercise research participation, as this will improve the translation of preliminary research into a larger phase II efficacy study.
Objectives: We aimed to understand experiences of persons with MS who participated in a feasibility research study of a home-based exercise intervention grounded in current physical activity guidelines and supplemented with behavioural change modules.
Methods: This study was a qualitative extension of our main feasibility study and included a basic qualitative research design based on feedback questionnaires and semi-structured interviews. Participants were recruited from those who completed our feasibility study of a 4-month home-based, exercise-training programme supplemented by behavioural strategies for promoting compliance among persons living with MS. Eighteen participants with mild to moderate disability provided study feedback. Coding and thematic analyses were performed, and questionnaire feedback and interview data were triangulated to provide meaningful data from participants.
Results: Our analysis identified two main themes for improving a future phase II efficacy study. The themes were 1. Enrolment and assessments and 2. Improvements in the design and delivery of the exercise programme components.
Conclusions: Exercise participation is important to improve and manage the symptoms and general health of persons with MS. Including persons with MS in the development and assessment of research will provide vital information to improve the design of future exercise studies. Capitalising on feedback from research participants and opinions from consumers of research will help researchers and clinicians deliver meaningful exercise interventions that are directly relevant to persons with MS.
The current physical activity guidelines for persons with MS are acceptable to persons with MS and rehabilitation professionals should prescribe these guidelines as appropriate.
Consideration should be made to the use of individualised recruitment methods to optimise participation of persons with MS in exercise interventions.
Rehabilitation professionals should combine behaviour change approaches with exercise interventions to optimise exercise participation in persons with MS.
Implications for Rehabilitation
Acknowledgements
The authors gratefully acknowledge the participation of all persons with MS and the wider MS-Community who were involved in this research. The authors wish to acknowledge members of the Project GEMS study not listed as coauthors of this article: B. Adamson and M Bohri.
Disclosure statement
The authors report no declarations of interest.