MuSic Moves-co-creating a music-supported exercise programme with and for people with multiple sclerosis: a bicentre participatory mixed methods study.

OBJECTIVES

To collaboratively develop a music-supported video-based exercise programme for people with multiple sclerosis (pwMS) with mild to severe disability.

DESIGN AND SETTING

We performed this participatory mixed methods study from 15 March 2022 to 22 July 2023 at two Austrian multiple sclerosis (MS) centres.

PARTICIPANTS

This research included 67 pwMS, of whom 18 pwMS (including two patient representatives and five MS support group leaders/members) and an additional three family members served as stakeholders. Six neurologists and six physiotherapists, each with >5 years of experience in treating pwMS were interviewed.

INTERVENTION

Stakeholders actively participated as members of study advisory, project steering and research groups. Researcher-supported peer-to-peer focus groups and individual interviews, conducted in three stages, gathered information on musical preferences and exercise needs. We co-developed, co-evaluated and co-adapted the music-supported exercise programme with the stakeholders. Involvement levels were measured using the Participation Check and Patient Public Involvement (PPI) Assessment Survey, self-efficacy with the Unidimensional Self-Efficacy Scale for Multiple Sclerosis and emotional states with the Self-Assessment Manikin.

RESULTS

We identified four themes through reflexive thematic analysis: (1) engagement; (2) ease; (3) autonomy; (4) musical meaning. Integration of qualitative and quantitative components highlighted the success of PPI activities: (a) 148 co-created, free videos are publicly available; (b) four videos provide expert interviews with general information, while 144 offer music-supported exercises tailored to pwMS with mild to severe disability; (c) patients found the videos relevant, feasible and usable in interviews and focus groups; (d) 'easy' category exercises (seated or lying) are suitable for severely affected pwMS; (e) stakeholders felt included, respected and heard, as shown by quantitative PPI assessments.

CONCLUSIONS

Stakeholders were essential in identifying key aspects, preferences and constraints early on. Their feedback on music and exercise shaped the project. This study transformed our approach to exercise for pwMS. Future studies are required to evaluate the programme's efficacy.

TRIAL REGISTRATION NUMBER

DRKS00027979.