Affordable Access

deepdyve-link
Publisher Website

Attendance at Fragile X Specialty Clinics: Facilitators and Barriers.

Authors
  • Kidd, Sharon A1
  • Raspa, Melissa2
  • Clark, Renée3
  • Usrey-Roos, Holly4
  • Wheeler, Anne C5
  • Liu, Jessica A6
  • Wylie, Amanda7
  • Sherman, Stephanie L8
  • 1 Sharon A. Kidd, University of California, San Francisco.
  • 2 Melissa Raspa, RTI International.
  • 3 Renée Clark, University of North Carolina, Chapel Hill.
  • 4 Holly Usrey-Roos, National Fragile X Foundation, Washington, DC.
  • 5 Anne C. Wheeler, RTI International.
  • 6 Jessica A. Liu, Sutter Health, Walnut Creek, CA.
  • 7 Amanda Wylie, RTI International.
  • 8 Stephanie L. Sherman, Emory University.
Type
Published Article
Journal
American journal on intellectual and developmental disabilities
Publication Date
Nov 01, 2017
Volume
122
Issue
6
Pages
457–475
Identifiers
DOI: 10.1352/1944-7558-122.6.457
PMID: 29115871
Source
Medline
Keywords
License
Unknown

Abstract

The objectives were to describe the demographic characteristics of children with Fragile X syndrome (FXS) and to determine predictors of attendance at Fragile X (FX) clinics. Findings from the Community Support Network (CSN) and Our Fragile X World (OFXW) samples showed that children who attended FX Clinics were mostly male, high-school aged or younger, and white, non-Hispanic. Using logistic regression models, awareness about FX Clinic services, guardian education, and income (CSN), and child age, family income, and total number of co-occurring conditions (OFXW) were predictors of clinic attendance. Demographic and child characteristics accounted for a large portion of the explained variance. Importantly, symptom severity and parent knowledge about services were independent predictors beyond the demographic characteristics of families.

Report this publication

Statistics

Seen <100 times