Current rehabilitation approaches in motor neurone disease and use of technology; an international survey of physiotherapists and occupational therapists.

Deirdre Murray, Avril Mc Tague, Lesley Doyle, Megan Walls, Miriam Galvin, Dara Meldrum
Purpose:

This study investigated the symptoms commonly addressed and current rehabilitation strategies used by PTs and OTs in MND care. This included examining the symptoms treated by PTs and OTs, the rationale for prescribing an aerobic and strengthening programme, identifying any barriers to prescribing a treatment programme, and the use and role of digital technologies in rehabilitation. 

Methods:

A survey containing 46 questions (open and closed-ended) was distributed online to registered OTs and PTs via international professional organisations and social media using the Qualtrics survey platform. The survey sought details on rehabilitation strategies for motor, respiratory, and cognitive impairments, the rationale for prescribing aerobic and strengthening exercises, and the barriers to prescribing a treatment programme. The role of digital technologies was also explored. Quantitative data were analysed statistically, while responses to the open-ended questions were qualitatively analysed.

Results:

Valid responses were obtained from 240 participants (female: n=215, 89.6%; PTs: n=155, 64.6%; OTs: n=85, 35.4%) across 16 countries in Europe, North America, and Australasia. Participants reported a median of 8 years working in ALS/MND (IQR 11), with 77.9% (n=187) treating 50 or fewer plwMND a year. Respondents were often or always involved in the treatment of fatigue (n=147, 61.2%), spasticity (n=108, 45%), pain (n=88, 36.6%), cognition (n=74, 30.8%), cough and secretions (n=67, 27.9%). PTs were associated with managing pain and providing aerobic and strengthening exercises. OTs were associated with managing cognition. When prescribing an aerobic programme, respiratory function, fatigue, and current ability were considered. Fatigue, stage of ALS/MND, and strength were considered when prescribing a strength programme. Lack of integrated care, limited experience with ALS/MND, and limited evidence base for ALS/MND interventions were barriers to prescribing a treatment programme. Just over a quarter (n=65, 27%) used technology in their clinical practice. Time, IT infrastructure, and being unaware of an ALS/MND digital platform were identified as the reasons for not using technology. Open-ended question responses indicated that respondents felt that technology could facilitate interventions and improve access to services.

Conclusion(s):

PTs and OTs manage a wide variety of symptoms in MND. The multifactorial nature of the interventions, combined with the low level of exposure to ALS/MND, highlights some of the challenges facing clinicians in ALS/MND. The use of technology was limited but viewed as having the potential to improve care for plwMND. 

Implications:

These survey findings highlight the challenges faced by PTs and OTs in the management of ALS/MND, especially for clinicians who do not frequently treat plwMND. Addressing the barriers identified by PTs and OTs should lead to improvement in clinical rehabilitation in ALS/MND.

Funding acknowledgements:
This study forms part of a PhD. This PhD is funded by an Irish Health Research Board Collaborative Doctoral Award.
Keywords:
Motor Neurone Disease
Amyotrophic Lateral Sclerosis
Survey
Primary topic:
Neurology
Second topic:
Oncology, HIV and palliative care
Did this work require ethics approval?:
Yes
Name the institution and ethics committee that approved your work:
Institution: Trinity College Dublin, the University of Dublin, Ireland. Ethics Committee: The School of Medical Research Ethics Committee
Provide the ethics approval number:
Ethics approval number: REAMS 2547
Has any of this material been/due to be published or presented at another national or international conference prior to the World Physiotherapy Congress 2025?:
Yes

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