Health services received by individuals with duchenne/becker muscular dystrophy.

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 Nerve

journal_title

Muscle & nerve

authors

Pandya SK,Campbell KA,Andrews JG,Meaney FJ,Ciafaloni E

doi

10.1002/mus.24727

subject

Has Abstract

pub_date

2016-02-01 00:00:00

pages

191-7

issue

2

eissn

0148-639X

issn

1097-4598

journal_volume

53

pub_type

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