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

• Published in: PloS one 2020-06, Vol.15 (6), p.e0234265-e0234265
• Main Authors: Slade, Susan C, Bruce, Christopher, McGinley, Jennifer L, Bloem, Bastiaan R, Morris, Meg E
• Format: Article
• Language: English
• Subjects: Accidental falls; Adaptation, Psychological; Aged; Balance; Basal ganglia; Biology and Life Sciences; Brain diseases; Care and treatment; Caregivers; Caregivers - psychology; Central nervous system diseases; Cognitive ability; Consent; Data collection; Disease Progression; Diseases; Ethics; Exercise; Exercise therapy; Eye movements; Female; Health Knowledge, Attitudes, Practice; Humans; Interviews; Male; Medicine and Health Sciences; Methods; Middle Aged; Morbidity; Movement disorders; Paralysis; Parkinson disease; Parkinson's disease; Parkinsonism; Participation; Physical activity; Physical fitness; Physical training; Progressive supranuclear palsy; Qualitative research; Rehabilitation; Researchers; Supranuclear Palsy, Progressive - physiopathology; Supranuclear Palsy, Progressive - psychology; Systematic review; Walking
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0234265

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. To identify beliefs about exercise and structured physical activity through the experience of people with PSP. 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. 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. 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. 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.