title: A national profile of health care and family impacts of children with muscular dystrophy and special health care needs in the United States.
abstract: We used the 2005-2006 National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.
authors.affiliation: Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA. louyang@cdc.gov
authors.forename: Lijing
authors.initials: L
authors.lastname: Ouyang
authors.forename: Scott D
authors.initials: SD
authors.lastname: Grosse
authors.forename: Michael H
authors.initials: MH
authors.lastname: Fox
authors.forename: Julie
authors.initials: J
authors.lastname: Bolen
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services / Q000191:economics / Q000706:statistics & numerical data*; D002675:Child, Preschool; D003710:Demography; D005191:Family Characteristics; D005260:Female; D006297:Health Services Accessibility; D006306:Health Surveys; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016015:Logistic Models; D008297:Male; D009136:Muscular Dystrophies / Q000191:economics / Q000453:epidemiology* / Q000628:therapy*; D020380:Needs Assessment; D012189:Retrospective Studies; D014481:United States / Q000453:epidemiology