Prevalence, Nature, and Correlates of Sleep Problems Among Children with Fragile X Syndrome Based on a Large Scale Parent Survey

Study Objectives: This study reports on current child sleep difficulties reported by parents of children with Fragile X syndrome (FXS). We address prevalence and type of sleep problems (e.g., difficulty falling asleep, frequent awakenings); type and effectiveness of medical and behavioral treatments (e.g., medication, surgery, environmental changes); and explore specific child and family characteristics (e.g., child age, child gender, co-occurring conditions) as possible predictors of child sleep difficulties. Design/Participants: This study is part of a larger survey addressing needs of families with children with FXS. This article focuses on the families who responded to the survey sleep questions, had one or more children with the full mutation FXS, and who reside in the United States. The mean age for male and female children in this group was 15 years and 16 years respectively (N = 1,295). Results: Parents reported that 32% of the children with FXS currently experience sleep difficulties; 84% of those children are reported to have >= 2 current sleep problems. Problems falling asleep and frequent night awakenings were the most frequently reported difficulties; 47% of males and 40% of females received >= 1medication to help with sleep. Children with more problematic health or behavioral characteristics had a higher likelihood of having current sleep problems. Conclusions: Our survey provides the most representative sample to date of sleep problems in children with FXS or any other neurodevelopmental disability. This large scale survey establishes a foundation for the prevalence of sleep disorders in children with FXS.