Correlates of care for young men with Duchenne and Becker muscular dystrophy

Muscle Nerve. 2014 Jan;49(1):21-5. doi: 10.1002/mus.23865. Epub 2013 Sep 11.

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.

Keywords: Duchenne and Becker muscular dystrophy; barriers to care; behavioral model; disease severity; healthcare services.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Adult
  • Caregivers / education
  • Child
  • Delivery of Health Care / statistics & numerical data*
  • Health Education / trends*
  • Health Resources / statistics & numerical data
  • Health Surveys
  • Humans
  • Income / statistics & numerical data*
  • Interviews as Topic
  • Male
  • Muscular Dystrophy, Duchenne / therapy*
  • Quality of Life
  • Severity of Illness Index*
  • Young Adult