Attendance at fragile X specialty clinics Facilitators and barriers

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.

Kidd, S. A., Raspa, M., Clark, R., Usrey-Roos, H., Wheeler, A. C., Liu, J. A., ... Sherman, S. L. (2017). Attendance at fragile X specialty clinics: Facilitators and barriers. American Journal on Intellectual and Developmental Disabilities, 122(6), 457-475. DOI: 10.1352/1944-7558-122.6.457