title: Health services received by individuals with duchenne/becker muscular dystrophy.
abstract: BACKGROUND
  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.
authors.affiliation: Department of Neurology, University of Rochester, 601 Elmwood Avenue, Box 673, Rochester, New York, 14642, USA.
authors.forename: Shree K
authors.initials: SK
authors.lastname: Pandya
authors.affiliation: New York State Department of Health, Albany, New York, USA.
authors.forename: Kim A
authors.initials: KA
authors.lastname: Campbell
authors.affiliation: Department of Pediatrics, University of Arizona, Tucson, Arizona, USA.
authors.forename: Jennifer G
authors.initials: JG
authors.lastname: Andrews
authors.affiliation: Department of Pediatrics, University of Arizona, Tucson, Arizona, USA.
authors.forename: F John
authors.initials: FJ
authors.lastname: Meaney
authors.affiliation: Department of Neurology, University of Rochester, 601 Elmwood Avenue, Box 673, Rochester, New York, 14642, USA.
authors.forename: Emma
authors.initials: E
authors.lastname: Ciafaloni
mesh_terms: D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data; D019058:Community Networks / Q000706:statistics & numerical data; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data*; D054625:Healthcare Disparities / Q000706:statistics & numerical data; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000453:epidemiology* / Q000628:therapy*; D011159:Population Surveillance / Q000379:methods; D012189:Retrospective Studies; D014481:United States
keywords: Duchenne muscular dystrophy; care recommendations; caregiver interview; disparities; health services