G. Ramdharry1, V. Buscemi1, A. Boaz2, H. Dawes3, T. Jaki4, F. Jones5, R. Lowe6, J. Marsden7, L. Paul8, R. Playle6, E. Randell6, M. Robling6, L. Rochester9, M. Busse6
1University College Hospitals NHS Foundation Trust, Queen Square Centre for Neuromuscular Diseases, London, United Kingdom, 2St George's University of London, London, United Kingdom, 3Oxford Brookes University, Oxford, United Kingdom, 4University of Lancaster, Lancaster, United Kingdom, 5Kingston University, London, United Kingdom, 6Cardiff University, Cardiff, United Kingdom, 7Plymouth University, Plymouth, United Kingdom, 8Glasgow Caledonian University, Glasgow, United Kingdom, 9Newcastle University, Newcastle, United Kingdom

Background: Individuals with rare neurological conditions (RNCs) often struggle to achieve regular physical activity and there are limited reports of ways in which health care professionals can best support those with RNCs to achieve their physical activity goals.  

Purpose: This study aimed to provide an overview of barriers, facilitators, needs, attitudes and beliefs on the experience of PA among individuals with RNCs, their family members and support groups. Further, this study explores the experience of supporting PA from the perspective of health care professionals working with individuals with RNCs.

Methods: We conducted face-to-face, semi-structured interviews with representatives of support groups and charities to provide a preliminary understanding of barriers to PA for individuals with a range of RNCs. This data also helped to develop a survey for individuals living with RNCs, their carers and/or family members, and health care professionals working with patients with RNCs. We invited individuals with RNCs and their family members, living in the UK, to complete this co-produced survey. They were disseminated by the support group/charity via their e-mail mailing list or social media posts. Healthcare professionals working in the UK were also invited to participate in the survey via e-mail from their relevant professional bodies.

Results: Individual charity stakeholder interviews revealed three overarching themes related to barriers to physical activity:
1. Healthcare organization and community exercise facility (access and communication);
2. Interpersonal (HCPs and carers involvement);
3. Individual (physical, cognitive and psychological challenges).
Data from 225 survey respondents were analysed. A majority achieved some level of regular physical activity but needed motivation to maintain this, and many felt they lacked the required knowledge to start and stay active. Resources and support were considered lacking. Responses from 117 surveys were from health professionals who mostly worked in specialist services, with a majority delivering support for physical activity. There was overwhelming agreement that people with RNC should be physically active, but respondents reported that there was a lack of evidence and resources.  

Conclusion(s): This work identified key barriers to physical activity for people living with RNCs.

Implications: The study highlights problems of lack of support for physical activity in the community across the current UK health services.

Funding, acknowledgements: This is a summary of independent research funded by a National Institute for Health Research Programme Development Grant   RP-DG-0517-10002.

Keywords: Physical activity, Barriers, Rare neurological diseases

Topic: Neurology

Did this work require ethics approval? Yes
Institution: Cardiff
Committee: Human Research Ethics Committee
Ethics number: SMREC 19/60)

All authors, affiliations and abstracts have been published as submitted.

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