Duchenne muscular dystrophyBMJ 2020; 368 doi: https://doi.org/10.1136/bmj.l7012 (Published 23 January 2020) Cite this as: BMJ 2020;368:l7012
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Fox et al are to be congratulated on their excellent review of Duchenne muscular dystrophy (DMD) and its management . May I comment on the management of some of the disabling consequences of the disease? They correctly report that most individuals with DMD live well into adulthood and that some will be able to gain employment. This needs to be prepared for by discussions with the parents regarding their ability to enable their child to develop self-confidence and social skills particularly from the age of attending secondary school. Provision of appropriate work experience and training enhances the potential to obtain employment [2-3].
This process is enormously enhanced with the use of assistive technology (AT) which was hardly noted in the review, except by Luke Millington commenting on the time he ‘began using a wheelchair’. Taking powered wheelchairs (PW) as just one example of the value of AT, they greatly facilitate the development of social skills by enhancing mobility and social independence. PW also provide opportunities for participation in wheelchair sports e.g. football and basketball which again enhance self-confidence and social participation . Such self-confidence is important for assisting in further education and potential employment and can be facilitated in both primary and secondary care. PW are also important clinical management tools, assisting in the management of problematic pain, kyphoscoliosis, dependent oedema and pressure sore prevention/management .
PW also facilitate use of environmental control units that enhance many aspects of individuals’ lives both indoors and outdoors together with communication equipment if needed .
Increasing independence of these young people also reduces carer strain, usually born by the parents . AT has enormous implications for quality of life, personal independence, carers and clinical management.
1. Fox, H., et al., Duchenne muscular dystrophy. BMJ (Clinical research ed.), 2020. 368: p. l7012.
2. Connolly, P. and T. Stevens, Get back to where we do belong. 2016, London, UK.: Disability Rights UK.
3. Frank, A., Vocational rehabilitation: supporting ill or disabled individuals in(to) work: a UK perspective. Healthcare, 2016. 4(46). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5041047/
4. Evans, S., et al., Young people's experiences using electric powered indoor-outdoor wheelchairs (EPIOCs): potential for enhancing users' development? Disabil Rehabil, 2007. 19(16): p. 1281-1294.
5. Frank, A.O. and L.H. De Souza, Clinical features of children and adults with a muscular dystrophy using powered indoor/outdoor wheelchairs: disease features, comorbidities and complications of disability. Disability and Rehabilitation, 2017: p. 1-7.
6. Frank, A., Transitional services for young adults: role of rehabilitation teams and assistive technology neglected? eBMJ, 2007. 334(7606).
7. Frank, A., et al., Electric Powered Indoor/outdoor Wheelchairs (EPIOCs): users views of influence on family, friends and carers. Disability & Rehabilitation Assistive Technology, 2010. 5(5): p. 327-338.
Competing interests: Trustee of the Vocational Rehabilitation Association