title: A population-based assessment of the health, functional status, and consequent family impact among children with Down syndrome.
abstract: BACKGROUND
  Many health conditions have been described in children with Down syndrome (DS). However, there are little comparative population-based data available.
  
  
  OBJECTIVE
  We sought to examine the health impacts associated with DS and other disabling conditions in U.S. children included in the 2005-2006 National Survey of Children with Special Health Care Needs.
  
  
  METHODS
  We assessed numerous health and functional outcomes in children with DS and without DS but with (1) mental retardation/developmental delay(1) and another developmental disability associated with a high functional impact; (2) mental retardation/developmental delay but no co-occurring high-impact disability; (3) other special health care needs; and (4) no special health care needs (referent).
  
  
  RESULTS
  Children with DS and in all 3 special health care needs comparison groups had substantially more health and functional difficulties than did the referent sample. Overall, children with DS were fairly comparable to children in the other mental retardation/developmental delay groups on health indicators; however, young children with DS were more likely than young children in both "other mental retardation" groups to have difficulties with breathing/respiration and swallowing/digestion/metabolism. Children with both DS and mental retardation associated with another high-impact disability had the highest levels of functional difficulties, unmet health needs, and family financial impacts. Nearly 60% of families in both groups provided home health care; in over 40%, a family member stopped working because of the child's condition; and about 40% reported the child's condition caused financial problems.
  
  
  CONCLUSIONS
  Children with DS can have substantial health and functional difficulties, with numerous financial impacts on their families.
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA. LSchieve@cdc.gov
authors.forename: Laura A
authors.initials: LA
authors.lastname: Schieve
authors.forename: Sheree L
authors.initials: SL
authors.lastname: Boulet
authors.forename: Michael D
authors.initials: MD
authors.lastname: Kogan
authors.forename: Kim
authors.initials: K
authors.lastname: Van Naarden-Braun
authors.forename: Coleen A
authors.initials: CA
authors.lastname: Boyle
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D002648:Child; D002657:Child Development; D002675:Child, Preschool; D019988:Children with Disabilities; D004314:Down Syndrome / Q000150:complications; D004651:Employment / Q000706:statistics & numerical data; D005190:Family; D005260:Female; D019538:Health Care Surveys; D005102:Health Expenditures / Q000706:statistics & numerical data; D006301:Health Services Needs and Demand; D054624:Health Status Disparities; D054625:Healthcare Disparities; D006699:Home Care Services / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D014481:United States