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Correlates of care for young men with duchenne and becker muscular dystrophy

Authors


  • This study was supported by a cooperative agreement between the Centers for Disease Control and Prevention and the Association of University Centers on Disabilities (AUCD RTOI 2004-03-03; principal investigators: F.J.M. and M.F.D.). The investigation was conducted in collaboration with the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) of sites funded through cooperative agreements with the Centers for Disease Control and Prevention.

ABSTRACT

Introduction: In progressive conditions, such as Duchenne and Becker muscular dystrophy (DBMD), the need for care may outpace care use. We examined correlates that contribute to utilization of needed care. Methods: Structured interviews were conducted on use of care among 34 young men with DBMD who were born before 1982. Results: Disease severity, per capita income, and presence of other relatives with DBMD predicted greater use of services. Race/ethnicity, acculturation, and level of caregiver education did not significantly predict service utilization. Conclusions: We identified disparities in receipt of healthcare and related services in adult men with DBMD that can affect quality of life. Despite the high disease severity identified in this population, these men utilized only half of the services available to individuals with significant progressive conditions. Providers should be aware of low service utilization and focus on awareness and assistance to ensure access to available care. Muscle Nerve 49: 21–25, 2014

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