title: Therapy service use among individuals with fragile X syndrome: findings from a US parent survey.
abstract: BACKGROUND
  Fragile X syndrome (FXS) is known to be associated with a range of developmental challenges, yet the occurrence and intensity of therapy services along with associated factors have not been determined.
  
  
  METHODS
  In a US national survey, caregivers provided information regarding the therapy services received by their sons (n = 1013) and daughters (n = 283) with FXS (from birth to 63 years; mean = 15.6 years, SD = 10.6). Caregivers reported (1) type, (2) amount, (3) location, and (4) overall satisfaction with services. Associations with other child variables and family income were also examined.
  
  
  RESULTS
  Key findings included that 72% of males and 47% of females were currently receiving at least one type of therapy service; the most common services for both males and females were speech-language therapy (ST) and occupational therapy (OT). Overall, males were more likely to receive therapy services as well as a greater number of services than females. Autism status was significantly associated with both males and females receiving ST and males receiving OT and behaviour management therapy. Therapies were provided in a variety of locations, and parents were generally satisfied with the amount and quality of therapy services. Age-related declines were evident in the use of services for both males and females, with very few individuals receiving any therapy services after 20 years of age.
  
  
  CONCLUSIONS
  This study provides a baseline description of the current state of therapy services for children with FXS, laying a foundation for future research and recommendations for service provision and policy.
authors.affiliation: Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. gary.martin@unc.edu
authors.forename: G E
authors.initials: GE
authors.lastname: Martin
authors.forename: K K
authors.initials: KK
authors.lastname: Ausderau
authors.forename: M
authors.initials: M
authors.lastname: Raspa
authors.forename: E
authors.initials: E
authors.lastname: Bishop
authors.forename: U
authors.initials: U
authors.lastname: Mallya
authors.forename: D B
authors.initials: DB
authors.lastname: Bailey
mesh_terms: D000293:Adolescent; D000328:Adult; D001521:Behavior Therapy / Q000706:statistics & numerical data*; D002648:Child; D002675:Child, Preschool; D005260:Female; D005600:Fragile X Syndrome / Q000453:epidemiology* / Q000628:therapy*; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D009788:Occupational Therapy / Q000706:statistics & numerical data*; D059825:Physical Therapists / Q000706:statistics & numerical data*; D012959:Socioeconomic Factors; D013066:Speech-Language Pathology / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology; D055815:Young Adult