Enablers to Exercise Participation in Progressive Supranuclear Palsy: Health Professional Perspectives

Abstract

Background: People living with progressive supranuclear palsy (PSP) can experience considerable difficulties with movement, walking, balance, and oculomotor control. The role of exercises and physical activities in mitigating the motor and non-motor symptoms of PSP remains uncertain.Aims: The aim of this study was to identify the perspectives and beliefs of health professionals about the benefits, enablers, and barriers to participation in exercise and physical activity across the course of disease progression of PSP.Methods: Qualitative methods, within a phenomenological framework, were used to obtain nursing and allied health professional perspectives and recommendations. Focus group and in-depth interview questions were derived from a systematic review on exercise for PSP. Expert opinions also guided the interviews, which were audio-recorded, transcribed verbatim, and de-identified. Two researchers independently conducted a thematic analysis.Results: Nineteen health professionals participated from the disciplines of nursing, physiotherapy, occupational therapy, and speech pathology. Four main themes emerged: (i) exercise and physical activities are important for living well with PSP; (ii) provision of information about the benefits of exercise and physical activities facilitates uptake; (iii) interdisciplinary teams work together to improve outcomes; and (iv) care partners can assist with the implementation of exercise and physical activities.Conclusion: Health professionals advocated physical therapies for people living with PSP. The expectation is that structured exercises and physical activities can help to optimize health and well-being, enabling people to continue to participate in social roles. The actual merits of such interventions must now be tested in large-scale controlled clinical trials.

Prevention of Falls in Parkinson's Disease: Guidelines and Gaps

“…Another barrier to receiving evidence‐based therapy is the parkinsonism subgroup. Little is known about how best to prevent falls in people with Progressive Supranuclear Palsy, Multiple System Atrophy, Cortico‐basal degeneration, and other forms of atypical parkinsonism 93,94 . We did not specifically evaluate the impact of deep brain stimulation (DBS) on falls; however patients undergoing DBS may share risk factors for falls with PD patients under medical management, including age, axial features, and disease duration 95 .…”

“…92 Digital delivery of falls prevention interventions is a promising intervention for the future yet the systems supporting it are still under development. Another barrier to receiving 93,94 We did not specifically evaluate the impact of deep brain stimulation (DBS) on falls; however patients undergoing DBS may share risk factors for falls with PD patients under medical management, including age, axial features, and disease duration. 95 Novel targets, such as the pedunculopontine nucleus (and other areas) are being investigated as potential targets that might improve axial features and falls risk.…”

Physiotherapy case reports on three people with progressive supranuclear palsy

“…Physiotherapy interventions for PSP face challenges owing to the absence of clinical guidelines on exercise for this disease. Previous studies have emphasized the importance of early exercise for enhancing to strength and overall motor function, particularly before cognitive impairment occurs (Wittwer et al, 2019;Morris et al, 2021;Dale et al, 2023). Case 3 highlights the benefits of initiating physiotherapy during the early stages of the disease.…”

“…Adapting interventions to the individual needs, preferences, motivations, and involvement of caregivers is crucial for continued intervention at home and, promoting greater knowledge about the disease and coping mechanisms (Slade et al, 2019. Communication difficulties and cognitive impairment can limit social participation Morris et al, 2021), as observed during the COVID-19 interruption.…”

“…Non-motor symptoms, such as fatigue, apathy, impulsivity, anxiety, and depression, are common in PSP patients (Steffen et al, 2015;Morris et al, 2021). While there is no cure for PSP, pharmacological therapy is the first approach, and a multidisciplinary team and palliative methods are often required in the later stages (Barsottini et al, 2010;Morris et al, 2021). Rehabilitation, including physiotherapy, is crucial for improving gait and preventing falls, hallmarks of the disease (Slade et al, 2019Wittwer et al, 2019;Morris et al, 2021).…”