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Keywords:

  • barriers to care;
  • behavioral model;
  • disease severity;
  • Duchenne and Becker muscular dystrophy;
  • healthcare services

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