G. Ramdharry1, V. Buscemi2, A. Boaz3, D. Helen4, T. Jaki5, F. Jones6, R. Lowe7, J. Marsden8, L. Paul9, R. Playle7, E. Randell7, M. Robling7, L. Rochester10, M. Busse7
1University College Hopsitals NHS Foundation Trust, Queen Square Centre for Neuromuscular Diseases, London, United Kingdom, 2University College Hospitals NHS Foundation Trust, Queen Square Centre for Neuromuscular Diseases, London, United Kingdom, 3St George's University of London, London, United Kingdom, 4Oxford Brookes University, Oxford, United Kingdom, 5University of Lancaster, Lancaster, United Kingdom, 6Kingston University, London, United Kingdom, 7Cardiff University, Cardiff, United Kingdom, 8Plymouth University, Plymouth, United Kingdom, 9Glasgow Caledonian University, Glasgow, United Kingdom, 10Newcastle University, Newcastle, United Kingdom

Background: People living with rare neurological conditions (RNCs) often face common physical, cognitive and psychological challenges leading to reduced physical activity and associated deconditioning. Physical activities are promoted as an essential part of the clinical management across RNCs, evidence supporting physical activity interventions is still lacking in these conditions. To date, there are significant gaps in understanding about which types of activities maintain physical functioning and increase participation in activities and quality of life across RNCs.  

Purpose: This scoping review aimed to synthesise the body of evidence for such interventions applied across a wide range of RNCs. We explored the following research questions:
1) What are the common exercise and physical activity interventions for people living with RNCs?
2) What are the characteristics of these interventions in terms of frequency, intensity, time and type?

Methods: This scoping review of systematic reviews was conducted according to the methodology outlined in the Joanna Briggs Institute (JBI) Reviewers’ Manual. We searched for of any type of physical activity and exercise interventions for seven rare neurological diseases and included outcomes at either the body structure/function, activity and/or participation levels. The research question of this scoping review was developed through discussions with stakeholders including patients and support groups representatives of seven rare conditions.

Results: Database searches identified 5435 articles, and, after removing duplicates, 4433 were screened by titles and abstracts, leaving 62 articles for full-text eligibility assessment. These articles were full-text screened of which 27 were included. There was variability in the disease populations investigated with few studies in some RNCs. The majority of reviews included studies of structured exercise using outcome measures at the level of body function and functional activity. Frequency, intensity, time and type of structured exercise varied considerably across studies. Most studies were methodologically limited by small sample sizes, variation in exercise dose and training duration.

Conclusion(s): To date, primary attention has been given to structured exercise interventions, which have demonstrated to have a low to uncertain level of evidence.

Implications: Novel approaches to implementing common interventions and modalities are needed to increase accessibility and engagement in physical activity irrespective of disease type.  

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, Exercise, Rare Neurological Diseases

Topic: Neurology

Did this work require ethics approval? No
Institution: Health Research Agency
Committee: N/A
Reason: Scoping review methodology

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

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