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S.P.55 Transition and outcomes for young men with Duchenne muscular dystrophy in New South Wales

Geevasinga, N., Young, H., Clarke, N., North, K., Sank, K., Tanner, C. and Needham, M. (2012) S.P.55 Transition and outcomes for young men with Duchenne muscular dystrophy in New South Wales. Neuromuscular Disorders, 22 (9-10). pp. 885-886.

Link to Published Version: http://dx.doi.org/10.1016/j.nmd.2012.06.273
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Abstract

Duchenne muscular dystrophy (DMD) is a progressive disorder that affects 1 in 3500 males and that typically results in death between 20 and 35 years of age from respiratory or cardiac failure. International standards of care have been devised to guide the management of DMD patients. Due to its high incidence in all populations of the world and relatively homogeneous natural history, health outcomes in DMD provide a useful yardstick by which to assess neuromuscular services between regions. There is currently little data available on how males with DMD in NSW, Australia, fare in terms of health outcomes. Such data would provide health service providers important feedback about the effectiveness of neuromuscular services in NSW compared to other populations in Australia and overseas. This study was designed to conduct an audit of all paediatric and adult neuromuscular services in NSW to document the morbidity and mortality of patients with Duchenne muscular dystrophy in NSW in the last 10 years, and evaluate their transition experience to adult services. In addition we describe the current range of paediatric and adult neuromuscular services available in NSW and review the literature to identify and evaluate the effectiveness of different transition models that have been developed internationally and within Australia.

Publication Type: Journal Article
Publisher: Elsevier BV
Copyright: © 2012 Published by Elsevier B.V.
URI: http://researchrepository.murdoch.edu.au/id/eprint/34726
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