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Supporting people affected by Charcot-Marie-Tooth disease.

Home based balance training for people with CMT: a feasibility study

Background

People with Charcot-Marie Tooth disease (CMT) fall frequently (Ramdharry G et al., 2011a). We are completing an exploratory study of factors

Gita demonstrating getting up from a fall

Gita demonstrating getting up from a fall

predicting falls risk (Dudziec et al., 2013). There have been few trials of balance training in people with CMT, with only one small study comparing a novel rehabilitation device with more traditional exercises (Matjacić and Zupan, 2006). Both interventions showed improvement in functional balance scores. Balance training in other types of neuropathy show some evidence of effect (Missaoui and Thoumie, 2013; Nardone et al., 2010; Quigley et al., 2014) though these studies focus on people with predominantly sensory impairment. In the older people, proximal muscle strengthening is recommended as an effective intervention to reduce falls, and there is a clear link between falls risk and quadriceps strength (Lord et al., 1994). Studies of proximal strength training in CMT have shown improvements in walking parameters (Chetlin et al., 2004; Lindeman et al., 1995), but the effect on balance has not been explored.

Because of the mixed sensori-motor presentation of people with CMT, a combined approach of multi-sensory balance training and proximal strengthening will be delivered. A home based model has been proposed as CMT is a life-long condition that needs to be managed by the individual outside of the medical or therapy environment.

Aims

This feasibility study will ascertain the effect of a home based exercise and training intervention on balance performance in people with CMT. It aims to explore whether the interventions can be successfully implemented in at home and ascertain the sensitivity of lab based and functional outcome measures. Also it will estimate achievable recruitment rates and the effect size of the intervention allowing sample size calculation for a larger study by comparing two arms: a treatment and advice group and an advice only group.

Method

A randomised control trial design will be used for this feasibility study. Participants will be blinded to their group allocation.
Personnel: One full time research assistant to do the home based training and day to day administration. One blinded assessor and the PI.
Recruitment: People with a sensorimotor presentation of CMT will be recruited from the clinics at the Centre for Neuromuscular Diseases (CNMD). Participants with differing genetic causes will be recruited but will be classified according to their physical presentation. This will be based on exploratory work we are currently conducting, plus classification models suggested in the literature (Guillebastre et al., 2013) (Don et al., 2007).
We have experience of recruiting people with this diagnosis to rehabilitation trials. In one study we recruited 32 people over two years (Ramdharry et al., 2011b) and our current study 30 people over two years (Dudziec et al., 2013). This would be a feasible recruitment rate for this study and would be sufficient for the aims of the study.

Group allocation

A block randomisation method, will be used to allocate participants to the treatment or control arm of the study based on the classification of physical presentation

Intervention details

Both groups will be given a face-to-face session of falls management advice plus supporting literature. The treatment group will also be prescribed a 12 week program of multisensory balance training and strengthening exercises. Balance training will be performed daily and consist of exercise to challenge stability and sensory feedback through closing eyes and using foam cushions.

The strength training element will include weight bearing lower limb exercises, resistance training of proximal lower limb muscles, using graded ankle weights, and strengthening of trunk stabilisers. Strength training will be performed 4 times per week. Resistance training of the proximal muscles will be prescribed at 50% of one repetition maximum initially, at two sets of 8-12 repetitions (ACSM, 2009). This can be increased to 60% and 70% when participants are easily completing 2 sets of 12 repetitions for a week. If the distal muscles are above grade 4 on the MRC scale, they will be strengthened using resistance band. The grade of resistance band to be used will be started at a 10 repetition maximum, 2 sets of 8-12 repetitions, and progressed as required. Muscles below grade 4 will not be strengthened using resistance, as by definition they will be unable to move a joint against resistance. Muscles at grade 3 will be trained using 2 sets of 8-12 repetitions against gravity.

Monitoring

Participants in the treatment phase complete an exercise diary and receive monthly visits to ensure safety of the program, re-assess strength and progress training. There will be fortnightly phone calls to monitor participation and any difficulties with the training. The control group will receive monthly phone calls to monitor falls incidence and answer queries.

Outcome measurement

Measures will be taken before and after training and control period at the Centre for Neuromuscular Diseases and participants will be re-imbursed their travel costs. The assessments will be performed by a blinded assessor.

 

This project will be recruiting in the latter part of 2015.

Charcot-Marie-Tooth UK are paying for this project in full – approximately £35,000 for a one year project.

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