title: A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability.
abstract: This study compares the family financial and employment impacts of having a child with fragile X syndrome (FXS), autism spectrum disorder (ASD), or intellectual disabilities (ID). Data from a 2011 national survey of families of children with FXS were matched with data from the National Survey of Children with Special Health Care Needs 2009-2010 to form four analytic groups: children with FXS (n=189), children with special health care needs with ASD only (n=185), ID only (n=177), or both ASD and ID (n=178). Comparable percentages of parents of children with FXS (60%) and parents of children with both ASD and ID (52%) reported that their families experienced a financial burden as a result of the condition, both of which were higher than the percentages of parents of children with ASD only (39%) or ID only (29%). Comparable percentages of parents of children with FXS (40%) and parents of children with both ASD and ID (46%) reported quitting employment because of the condition, both of which were higher than the percentages of parents of children with ID only (25%) or ASD only (25%). In multivariate analyses controlling for co-occurring conditions and functional difficulties and stratified by age, adjusted odds ratios for the FXS group aged 12-17 years were significantly elevated for financial burden (2.73, 95% CI 1.29-5.77), quitting employment (2.58, 95% CI 1.18-5.65) and reduced hours of work (4.34, 95% CI 2.08-9.06) relative to children with ASD only. Among children aged 5-11 years, the adjusted odds ratios for the FXS group were elevated but statistically insignificant for financial burden (1.63, 95% CI 0.85-3.14) and reducing hours of work (1.34, 95% CI 0.68-2.63) relative to children with ASD only. Regardless of condition, co-occurring anxiety or seizures, limits in thinking, reasoning, or learning ability, and more irritability were significantly associated with more caregiver financial and employment impacts. Proper management of anxiety or seizures and functional difficulties of children with FXS or other developmental disabilities may be important in alleviating adverse family caregiver impacts.
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, United States. Electronic address: louyang@cdc.gov.
authors.forename: Lijing
authors.initials: L
authors.lastname: Ouyang
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, United States.
authors.forename: Scott D
authors.initials: SD
authors.lastname: Grosse
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, United States.
authors.forename: Catharine
authors.initials: C
authors.lastname: Riley
authors.affiliation: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, United States.
authors.forename: Julie
authors.initials: J
authors.lastname: Bolen
authors.affiliation: RTI International, Research Triangle Park, NC, United States.
authors.forename: Ellen
authors.initials: E
authors.lastname: Bishop
authors.affiliation: RTI International, Research Triangle Park, NC, United States.
authors.forename: Melissa
authors.initials: M
authors.lastname: Raspa
authors.affiliation: RTI International, Research Triangle Park, NC, United States.
authors.forename: Donald B
authors.initials: DB
authors.lastname: Bailey
mesh_terms: D000203:Activities of Daily Living / Q000145:classification / Q000523:psychology; D000293:Adolescent; D001008:Anxiety Disorders / Q000175:diagnosis / Q000523:psychology; D001076:Aptitude; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000175:diagnosis* / Q000523:psychology*; D002675:Child, Preschool; D015897:Comorbidity; D017281:Cost of Illness; D004651:Employment; D005260:Female; D005600:Fragile X Syndrome / Q000175:diagnosis* / Q000523:psychology*; D006306:Health Surveys; D006801:Humans; D007182:Income; D008607:Intellectual Disability / Q000175:diagnosis* / Q000523:psychology*; D007508:Irritable Mood; D008297:Male; D012640:Seizures / Q000175:diagnosis / Q000523:psychology
keywords: Autism spectrum disorders; Caregiver impacts; Fragile X syndrome; Intellectual disability
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