Interventions for promoting physical activity in people with neuromuscular disease

Jones, Katherine; Hawke, Fiona; Newman, Jane; Miller, James; Burns, Joshua; Jakovljevic, Djordje G.; Gorman, Gráinne; Turnbull, Douglass M.; Ramdharry, Gita

doi:10.1002/14651858.cd013544

Cited by 6 publications

(12 citation statements)

References 25 publications

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“…World Health Organisation (WHO) activity recommendations seem generally applicable and safe [1] for many other neuromuscular diseases. For example, those originating from neuromuscular junction pathology, such as Myasthenia Gravis [10], or nervous system pathologies, such as peripheral neuropathies [11,12] and Spinal and Bulbar Muscular Atrophy [12]. However, there is less evidence regarding safe activity dosage for adults with muscle disease [3].…”

Section: Introductionmentioning

confidence: 99%

The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases

Roberts-Lewis

White

Ashworth

et al. 2021

Disability and Rehabilitation

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Purpose: Measuring the physical activity of adults with progressive muscle diseases is important to inform clinical practice, for activity recommendations and for outcomes meaningful to participants in clinical trials. Despite its wide use, the measurement properties of the International Physical Activity Questionnaire (IPAQ) have not been established in a muscle disease population. Materials and methods: The sample of 103 adults with progressive muscle diseases included independently mobile participants and wheelchair users. Their home-based activity measured by the IPAQ was compared to simultaneous weeks of accelerometer activity data collected remotely in a longitudinal, measure evaluation study. Validity, reliability, and responsiveness were evaluated for the IPAQ alone, and for the IPAQ used in conjunction with a smart activity monitor. Results: The IPAQ did not demonstrate satisfactory criterion validity, reliability or responsiveness and it systematically overestimated moderate and vigorous physical activity time by 161 minutes per week. Measurement properties of the IPAQ were improved when it was used in combination with a smart activity monitor. Conclusions: The IPAQ did not have satisfactory measurement properties compared to accelerometry in adults with progressive muscle disease. Combining self-report and objective activity measures might improve the accuracy of physical activity assessment in this and other comparable populations.Physical activity is a meaningful health outcome for adults with progressive muscle diseases, for whom precise activity quantification is important because of the potential for activity-related disease exacerbation. The International Physical Activity Questionnaire (IPAQ) had unsatisfactory measurement properties compared to accelerometry; however, these were improved by adjunctive smart activity monitoring. Objective or combined physical activity measurement is recommended over self-report alone for clinical assessment of physical activity as part of rehabilitation and self-management programmes.

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Section: Introductionmentioning

confidence: 99%

The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases

Roberts-Lewis

White

Ashworth

et al. 2021

Disability and Rehabilitation

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“…Our search identified new trial protocols for NMDs, such as a randomised controlled trial of personalized intensive exercise program for hereditary cerebellar ataxias [9 ▪ ]. There is also a Cochrane systematic review evaluating physical activity for patients with NMDs [10 ▪ ]. Based on current evidence, we conclude that low-to-moderate intensity exercise programs are likely to be safe for many NMDs and have the potential to provide systemic health benefits, retain function, and possibly slow progression of impairments such as muscle weakness and aerobic capacity.…”

Section: Exercisementioning

confidence: 89%

Neuromuscular rehabilitation – what to do?

Mandarakas

Young²,

Burns

2021

Current Opinion in Neurology

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Purpose of reviewRehabilitation for patients with neuromuscular disorders (NMDs) has undisputed health benefits and is potentially therapeutic for targeting impairments, improving quality of life, and enabling activities of daily living. Whilst rehabilitation is commonly prescribed, unequivocal evidence and disease-related guidelines are lacking. This review highlights recent studies of exercise, assistive devices, respiratory management and manual therapy and stretching for patients with NMDs.Recent findingsRandomised controlled trials of neuromuscular rehabilitation are scant, often underpowered and lack a control group. Recent case studies, clinical trials and cohort studies support rehabilitative therapies such as exercise, respiratory muscle training, assistive devices, and manual therapy and stretching, to provide systemic health benefits, with the possibility to retain or improve function. No evidence of overwork weakness or muscle damage have been reported in exercise trials, and rehabilitative exercise programs in many cases lead to positive psychosocial impacts. Tele-rehab is an emerging area of interest, as a response to the COVID-19 pandemic.SummaryRobust evidence for the benefits of neuromuscular rehabilitation is lacking, and clinical trial quality can be improved. Tele-rehab is a tantalising development to improve access to neuromuscular rehabilitation in both metropolitan and remote settings during and beyond the COVID-19 pandemic.

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“…In the absence of more specific treatments, rehabilitation is the only option for individuals with FSHD [1,4]. There is, however, still no compelling evidence of the effectiveness of different types of rehabilitation programs, which necessitates further research [5,6].…”

Section: Introductionmentioning

confidence: 99%

Fitness and walking outcomes following aerobic and lower extremity strength training in facioscapulohumeral dystrophy: a case series

Prieur-Blanc,

Cotinat,

Vansteenkiste

et al. 2024

International Journal of Rehabilitation Research

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Facioscapulohumeral muscular dystrophy (FSHD) is a common form of adult muscular dystrophy often resulting also in cardiorespiratory deconditioning and weakness of the lower limbs. Although previous studies examined outcomes of interventions aimed at improving either cardiorespiratory fitness or muscle strength, the potential benefits of a rehabilitation program targeting both remain unexplored. Thus, the aim of this study was to evaluate changes following participation in a rehabilitation program combining aerobic and strength exercises. We conducted a retrospective analysis of 10 subjects with FSHD who participated in our rehabilitation program during 2018 and 2019. Each of the 20 sessions consisted of aerobic training on a cycloergometer and a moderate lower limb strength exercises on an isokinetic machine in combination with conventional therapy. The primary outcomes were walking speed, aerobic performance and isokinetic strength of the knee extensors and flexors. The secondary outcomes were fatigue, insomnia. VO2max and walking speed increased significantly by 2.125 ml·kg−1·min−1 [95% confidence interval (CI): 0.75–3.62, P = 0.022] and 0.28 m/s (95% CI: 0.16–0.4, P = 0.002), respectively. The effect size was small for V02max (Hedge’s g, 0.44; 95% CI: −0.5 to 1.37) and large for walking speed (Hedge’s g, 0.99; 95% CI: 0.06–1.92). The knee flexor strength significantly increased at rehabilitation discharge (repeated measures analysis of variance P = 0.004). Positive changes in fatigue and insomnia were also observed. Our preliminary results provide evidence that a relatively short course of a comprehensive rehabilitation program targeting both cardiorespiratory fitness and knee muscle strength can be beneficial for people with FSHD, which warrants further prospective studies.

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Interventions for promoting physical activity in people with neuromuscular disease

Abstract: Analysis 4.2. Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 2: Disease-specific quality of life questionnaire

Cited by 6 publications

References 25 publications

The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases

The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases

Neuromuscular rehabilitation – what to do?

Fitness and walking outcomes following aerobic and lower extremity strength training in facioscapulohumeral dystrophy: a case series

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