Physical activity and exercise interventions for people with rare neurological disorders : a scoping review of systematic reviews

Buscemi, Valentina, Boaz, Annette, Dawes, Helen, Jaki, Thomas, Jones, Fiona, Lowe, Rachel, Marsden, Jonathan, Paul, Lorna, Playle, Rebecca, Randell, Elizabeth, Robling, Mike, Rochester, Lynne, Busse, Monica and Ramdharry, Gita (2019) Physical activity and exercise interventions for people with rare neurological disorders : a scoping review of systematic reviews. Research Square,


Abstract Background: People living with rare neurological conditions (RNCs) often face common physical, cognitive and psychological challenges that lead to reduced physical activity and associated deconditioning. Physical activity interventions are routinely utilised to address disease specific limitations with the intention of promoting participation in people with RNCs. This scoping review aimed to synthesise the body of evidence for such interventions as they are applied across a wide range of RNCs. Methods: We undertook a scoping review of systematic reviews of any type of physical activity and exercise interventions for adults with neuromuscular diseases, motor neurone disease, Huntington’s disease, progressive supranuclear palsy, multiple system atrophy, inherited ataxias and hereditary spastic paraplegia. The reviews were included if they reported at least one outcome that aimed to increase physical activity level at either the body structure/function, activity and/or participation levels. Results: Sixty-two articles were full-text screened of which 27 were included. Most studies involved interventions in people with neuromuscular diseases. No reviews of interventions in hereditary spastic paraparesis were identified. The majority of reviews included studies of structured exercise using outcome measures at the level of body function and functional activity. Interventions were grouped as: i) combined interventions; ii) muscle strength training; iii) respiratory training; iv) aerobic training. Frequency, intensity, time and type of structured exercise utilised varied considerably across studies. Most studies were methodologically limited by small sample sizes, variation in exercise dose and training duration.Conclusions: To date, primary attention has been given to structured exercise interventions, which have demonstrated to have a low to uncertain level of evidence. Novel approaches to implementing common interventions and modalities are needed to increase accessibility and engagement in physical activity irrespective of disease type. Further exploration is warranted to achieve consensus on outcome measures that reflect areas of importance and relevance to people with RNCs.

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