Upper limb rehabilitation in fascioscapularhumeral dystrophy (FSHD): a patients perspective

Purpose: The study aims to identify exercise programmes used by Facioscapulohumeral dystrophy (FSHD) patients in the community, along with barriers and perceptions. Methods: A web based survey, distributed to patients on the UK FSHD registry, and focus groups were conducted. Thematic analysis was conducted on answers to survey questions supported by focus group notes, from seven FSHD patients. Results: A response rate of 43.6% was achieved with 232 out of 532 patients completing the survey. Only 44.4% engaged with exercises targeting the upper body. The themes from the data were: 1) Understanding of disease mechanism shaping exercise choice 2) Lack of understanding about the condition and how exercise interacts with it 3) Support from professionals 4) Barriers to exercise and 5) Thoughts about future research. Conclusion: Exercise selection was variable amongst FSHD patients. Lack of information, pain, fatigue, availability and access to facilities, cost and time were identified as barriers to exercise. Participants (92.2%) agreed additional research into upper limb exercises is needed and felt a 3-month arm cycling intervention with monthly clinical visits and MRI imaging would be appropriate. Further research is needed to develop evidence based exercise interventions and guidance for upper limb exercise prescription in FSHD.