title: Health care utilization and costs for children and adults with duchenne muscular dystrophy.
abstract: Duchenne muscular dystrophy (DMD) is an incurable neuromuscular disorder of childhood. Healthcare, caregiving, and other resource needs of affected individuals are thought to be substantial; however, the economic burden associated with DMD has not yet been assessed specifically in Australia.
  
  
  
  Australian households with a child with DMD were asked to complete a cross-sectional survey. Data were collected on annual resource utilization including hospital and medical services, equipment, home modifications, informal care, and working days lost.
  
  
  
  Mean healthcare costs were found to be $10,046 Australian dollars per affected individual and were markedly higher than average Australian health expenditures at each age group. The mean total cost was $46,700 (median $32,300), with healthcare costs contributing 22% of total costs.
  
  
  
  The annual economic cost of DMD was found to be high, reflecting a significant socioeconomic burden, especially in boys who reach adulthood, where household resource use and caregiving burden is highest. Muscle Nerve 53: 877-884, 2016.
authors.affiliation: School of Population Health, The University of Western Australia, Crawley, Western Australia, Australia.
authors.forename: Lucinda J
authors.initials: LJ
authors.lastname: Teoh
authors.affiliation: Harry Perkins Institute of Medical Research, The University of Western Australia, Nedlands, Western Australia, Australia.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Geelhoed
authors.affiliation: Harry Perkins Institute of Medical Research, The University of Western Australia, Nedlands, Western Australia, Australia.
authors.forename: Klair
authors.initials: K
authors.lastname: Bayley
authors.affiliation: Telethon Kids Institute, Child Disability Research, West Perth, Western Australia, Australia.
authors.forename: Helen
authors.initials: H
authors.lastname: Leonard
authors.affiliation: Harry Perkins Institute of Medical Research, The University of Western Australia, Nedlands, Western Australia, Australia.
authors.forename: Nigel G
authors.initials: NG
authors.lastname: Laing
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001315:Australia; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D007223:Infant; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000191:economics* / Q000628:therapy*; D012189:Retrospective Studies; D055815:Young Adult
keywords: DMD; Duchenne muscular dystrophy; burden; cost; healthcare; muscular dystrophy; resource use