Patient and care partner views on exercise and structured physical activity for people with Progressive Supranuclear Palsy

Progressive Supranuclear Palsy (PSP) is a debilitating form of atypical Parkinsonism. People living with PSP experience movement disorders affecting walking, balance and eye movements. The role of exercise in optimising movement remains unclear. Aims To identify beliefs about exercise and structured physical activity through the experience of people with PSP. Methods Using a phenomenological theoretical framework, qualitative methods were employed to obtain the views of people living with PSP, and their care partners, by in-depth interviews. Questions derived from a systematic review and expert opinions guided the interviews which were audio-recorded, transcribed and de-identified. Two researchers independently conducted thematic analysis and reached consensus on emerging themes. Results There were 16 participants. Four themes were identified: (i) there are beliefs and preferences about exercise and physical activity that can impact on engagement; (ii) difficulty coping with disease progression impacts activities; (iii) facilitators to exercise include individual preferences, access to facilities and expert advice; and (iv) perceived barriers include beliefs about limited exercise options, falls risk, cost, transport and access to credible information. Discussion People living with PSP want early guidance about the condition and the role of exercise. It is important to quickly enable people to have access to evidence and resources supporting exercise and structured physical activities. Consideration of individual preferences and access to expert advice facilitate engagement. Individual barriers need to be identified and solutions found. Conclusion People living with PSP are amenable to exercise, especially early in the disease process. Clear guidelines are warranted to document which exercises, and physical activities are most beneficial.