Health services received by individuals with duchenne/becker muscular dystrophy

Muscle Nerve. 2016 Feb;53(2):191-7. doi: 10.1002/mus.24727. Epub 2015 Dec 29.


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.

Keywords: Duchenne muscular dystrophy; care recommendations; caregiver interview; disparities; health services.

MeSH terms

  • Caregivers / psychology
  • Caregivers / statistics & numerical data
  • Community Networks / statistics & numerical data
  • Female
  • Health Services / statistics & numerical data*
  • Healthcare Disparities* / statistics & numerical data
  • Humans
  • Longitudinal Studies
  • Male
  • Muscular Dystrophy, Duchenne / epidemiology*
  • Muscular Dystrophy, Duchenne / therapy*
  • Population Surveillance / methods
  • Retrospective Studies
  • United States