Abstract:
INTRODUCTION:Anecdotal reports from families and care providers suggest a wide variation in services received by individuals with Duchenne/Becker muscular dystrophy (DBMD). METHODS:We documented the type and frequency of health services received by individuals with DBMD using the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) interview data released in June 2012. Interviews with eligible caregivers from 5 sites (Arizona, Colorado, Georgia, Iowa, and western New York) were conducted from April 2007 to March 2012. RESULTS:Two hundred ninety-six caregivers (66% of those contactable) participated in the interview. There were significant differences among sites in the specialists seen and services received. Concurrence with cardiac recommendations was higher than that with respiratory recommendations. CONCLUSIONS:The results of this survey support and quantify the anecdotal reports from families and care providers regarding the disparities in services received by individuals with DBMD. It remains to be determined whether these differences affect outcomes.
journal_name
Muscle Nervejournal_title
Muscle & nerveauthors
Pandya SK,Campbell KA,Andrews JG,Meaney FJ,Ciafaloni Edoi
10.1002/mus.24727subject
Has Abstractpub_date
2016-02-01 00:00:00pages
191-7issue
2eissn
0148-639Xissn
1097-4598journal_volume
53pub_type
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