Affiliations: [a] Department of Neurology, University of Rochester, Rochester, NY, USA | [b] New York State Department of Health, Albany, NY, USA | [c] Department of Pediatrics, University of Arizona, Tucson, AZ, USA
Correspondence:
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Corresponding author: Shree Pandya, School of Medicine and Dentistry, University of Rochester, 601 Elmwood Avenue, Rochester, NY 14642, USA. Tel.: +1 585 275 1005; Fax: +1 585 273 1255; E-mail:[email protected]
Abstract: PURPOSE: To document use of rehabilitative technology among
individuals with Duchenne/Becker muscular dystrophy (DBMD) among sites of
the Muscular Dystrophy Surveillance, Tracking, and Research network (MD
STARnet). METHODS: Data from 362 caregivers who participated in the MD
STARnet caregiver interview between April 2006 and March 2012 (54.7%
response rate) were analyzed to assess the type, frequency and duration of
use of assistive technology. RESULTS: Caregiver reports of technology use by individuals with
DBMD across five MD STARnet sites in the US demonstrated significant regional
differences in the proportion of individuals who had ever used night splints
(36.9%-73.0%), standers (3.1%-22.2%) and scooters
(10.7%-54.5%). Among individuals who used night splints 59.7%
stopped using them at a mean age of 10.3 years after a mean duration of 2.9
years in spite of the current recommendation to continue using them through
the non-ambulatory phase. DISCUSSION: Results of this comprehensive survey document the
frequency of assistive device use by individuals with DBMD in the USA and
also provides data on differences across the sites. Further research is
needed to understand the reasons for and the impact of these differences on
clinical outcomes and health related quality of life of individuals with DBMD.
