Affiliations: [a] Neurology Department, The Royal Children's Hospital, Melbourne, Victoria, Australia | [b] Murdoch Childrens Research Institute, Melbourne, Victoria, Australia | [c] Department of Paediatrics, University of Melbourne, Victoria, Australia
Correspondence:
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Corresponding author: Katy de Valle, 3 West Clinical Offices, Neurosciences Department, The Royal Children's Hospital, 50 Flemington Road, Parkville, VIC 3052, Australia. Tel.: +61 3 9345 04287; Fax: +61 3 9345 5977; E-mail:katy.devalle@rch.org.au
Abstract: PURPOSE: To record the use and perceived benefits of mainstream
allied health services, complementary therapies, nutritional supplements and
structured physical activity in a paediatric population of males with
Duchenne or Becker muscular dystrophy. METHOD: A questionnaire was distributed to 125 parents of males
with a dystrophinopathy within a tertiary neuromuscular clinic population in
Melbourne, Australia. RESULTS: Response rate to the survey was 41%. Most families
(73%) reported use of allied health services: physiotherapy (65%),
occupational therapy (47%), and psychology (25%). The most commonly
used complementary therapy was massage (31%). Sixty-five percent of
families reported using nutritional supplements. Fifty-one and 38% of
families reported participation in swimming and other organised sports,
respectively. Physical and psychological benefits of sporting activities
were identified by families. Participation in physical activity was lowest
in those transitioning to full-time wheelchair use. CONCLUSIONS: Access to allied health services by boys with
dystrophinopathies is variable and inconsistent with published international
standards of care. There is frequent use of complementary therapies, despite
a lack of proven efficacy. Studies of the effects of such therapies would
support provision of evidence-based advice to families. Continued
involvement in physical activity for those boys with declining function
should be supported by clinicians.
