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J Pediatr Rehabil Med. 2016;9(1):45-53. doi: 10.3233/PRM-160356.

Rehabilitative technology use among individuals with Duchenne/Becker muscular dystrophy.

Author information

1
Department of Neurology, University of Rochester, Rochester, NY, USA.
2
Department of Pediatrics, University of Arizona, Tucson, AZ, USA.
3
New York State Department of Health, Albany, NY, USA.

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.

KEYWORDS:

Duchenne muscular dystrophy; assistive devices; caregiver interview; orthosis; technology use

PMID:
26966800
DOI:
10.3233/PRM-160356
[Indexed for MEDLINE]

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