Effect of aerobic exercise training and cognitive behavioural therapy on reduction of chronic fatigue in patients with facioscapulohumeral dystrophy: protocol of the FACTS-2-FSHD trial

BackgroundAlthough muscular dystrophy causes muscle weakness and muscle loss, the role of exercise in the management of this disease remains controversial.ObjectiveThe purpose of this systematic review is to evaluate the role of exercise interventions on muscle strength in patients with muscular dystrophy.MethodsWe performed systematic electronic searches in Medline, Embase, Web of Science, Scopus and Pedro as well as a list of reference literature. We included trials assessing muscle exercise in patients with muscular dystrophy. Two reviewers independently abstracted data and appraised risk of bias.ResultsWe identified five small (two controlled and three randomized clinical) trials comprising 242 patients and two ongoing randomized controlled trials. We were able to perform two meta-analyses. We found an absence of evidence for a difference in muscle strength (MD 4.18, 95% CIs - 2.03 to 10.39; p = 0.91) and in endurance (MD −0.53, 95% CIs –1.11 to 0.05; p = 0.26). In both, the direction of effects favored muscle exercise.ConclusionsThe first included trial about the efficacy of muscular exercise was published in 1978. Even though some benefits of muscle exercise were consistently reported across studies, the benefits might be due to the small size of studies and other biases. Detrimental effects are still possible. After several decades of research, doctors cannot give advice and patients are, thus, denied basic information. A multi-center randomized trial investigating the strength of muscles, fatigue, and functional limitations is needed.

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“…We counted these as one entry for meta-analyses. Finally, seven trials were included [36], [37], [38], [39], [40], [41], [42], Figure 1.…”

Section: Resultsmentioning

confidence: 99%

“…The included studies are three RCTs [38], [39], [40], two controlled clinical trials [41], [42] and two ongoing RCTs [36], [37]. Main features of the seven trials are summarized in Table 1.…”

Section: Resultsmentioning

confidence: 99%

Efficacy of Muscle Exercise in Patients with Muscular Dystrophy: A Systematic Review Showing a Missed Opportunity to Improve Outcomes

Gianola

Pecoraro

Lambiase³

et al. 2013

PLoS ONE

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“…[11] In order to embark on this, there must be a greater understanding of the patterns of activity observed in people with CMT. This study aimed to compare physical activity, patterns of sedentary behavior and overall energy expenditure of people with CMT and healthy matched controls.…”

Section: Introductionmentioning

confidence: 99%

A study of physical activity comparing people with Charcot-Marie-Tooth disease to normal control subjects

Ramdharry

Pollard

Grant

et al. 2016

Disability and Rehabilitation

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Purpose Charcot Marie Tooth disease (CMT) describes a group of hereditary neuropathies that present with distal weakness, wasting and sensory loss. Small studies indicate that people with CMT have reduced daily activity levels. This raises concerns as physical inactivity increases the risk of a range of co- morbidities, an important consideration in the long-term management of this disease. This study aimed to compare physical activity, patterns of sedentary behavior and overall energy expenditure of people with CMT and healthy matched controls. Methods We compared 20 people with CMT and 20 matched controls in a comparison of physical activity measurement over seven days, using an activity monitor. Patterns of sedentary behavior were explored through a power law analysis. Results Results showed a decrease in daily steps taken in the CMT group, but somewhat paradoxically, they demonstrate shorter bouts of sedentary activity and more frequent transitions from sedentary to active behaviors. No differences were seen in energy expenditure or time spent in sedentary, moderate or vigorous activity. Conclusion The discrepancy between energy expenditure and number of steps could be due to higher energy requirements for walking, but also may be due to an over-estimation of energy expenditure by the activity monitor in the presence of muscle wasting. Alternatively, this finding may indicate that people with CMT engage more in activities or movement not related to walking.

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“…There are also many empirically supported methods to address the change in cognitive and behaviour among other chronic disease population such as behavioural therapy, mindfulness-based cognitive therapy and acceptance-commitment therapy. However, as far as muscular dystrophy is concerned and as far as the author of this study knows, there was only one psychological intervention trial involving the muscle disease patients (Voet et al, 2010).…”

Section: Resultsmentioning

confidence: 99%

From Diagnosis to Treatment of Muscular Dystrophy: Psychology Meets Medicine

Ismail¹,

Othman

2015

IJPS

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This paper will briefly discuss the condition of muscular dystrophy disease in Malaysia and will explore the potential of psychological approach in managing the muscular dystrophy patients in Malaysia. Muscular dystrophy is a hereditary and progressive degenerative disorder affecting skeletal muscles, and also often other organ systems. This term includes many conditions associated to the muscle wasting and weakness where all are still genetic but having different types due to different genes and differ in severity. It is estimated there are around 43 newborns are affected by muscular dystrophy each year in Malaysia. The real burden of muscular dystrophy in Malaysia is difficult to estimate, since the epidemiological data for each of muscular dystrophies and even for muscular dystrophies in collective are not available. There are not many researches focusing on muscular dystrophy in Malaysia. The few available researches related to muscular dystrophy in Malaysia are mostly revolving around the medical and genetic science aspects of it, not in the psychology and social sides of the disease.

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Effect of aerobic exercise training and cognitive behavioural therapy on reduction of chronic fatigue in patients with facioscapulohumeral dystrophy: protocol of the FACTS-2-FSHD trial

Cited by 48 publications

References 43 publications

Efficacy of Muscle Exercise in Patients with Muscular Dystrophy: A Systematic Review Showing a Missed Opportunity to Improve Outcomes

Efficacy of Muscle Exercise in Patients with Muscular Dystrophy: A Systematic Review Showing a Missed Opportunity to Improve Outcomes

A study of physical activity comparing people with Charcot-Marie-Tooth disease to normal control subjects

From Diagnosis to Treatment of Muscular Dystrophy: Psychology Meets Medicine

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