Parent survey of sleep problems among children with CHARGE syndrome.

Sleep problems are common among children, especially those with developmental disabilities, visual impairments, and behavioral problems. Past research has indicated a particularly high prevalence of clinically-relevant sleep problems for children with CHARGE syndrome, who often possess all three of these qualities. To gather additional information regarding the nature of these sleep problems and how they are most commonly treated amongst parents, an explorative survey was conducted with 30 parents of children with CHARGE syndrome with comorbid sleep problems using the Sleep Disturbance Scale for Children, as well as demographic and sleep questionnaires developed for use in this study. Our findings indicated that problems of sleep initiation and maintenance were most commonly reported, consistent with previous research. Parents most often reported the following factors suspected of contributing to sleep problems: self-regulation difficulties, teeth grinding, hormonal imbalance, problem behaviors, and anxiety. The most commonly administered treatments were reported to be the use of positive bedtime routines, melatonin treatment, the use of a weighted blanket, and prescription medications, respectively. While parents reported overall that they felt all three of these intervention strategies were slightly effective at improving their child's sleep problem, the use of positive bedtime routines and melatonin treatment were perceived as more effective by parents. These results aid professionals in the selection of future research and intervention strategies to recommend for parents of children with CHARGE syndrome.

Quality of life in adolescents and adults with CHARGE syndrome.

Health-related Quality of Life and the Impact of Childhood Neurologic Disability Scale were collected for 53 patients with CHARGE syndrome aged 13-39 years with a mean academic level of 4th grade. The most prevalent new and ongoing issues included bone health issues, sleep apnea, retinal detachment, anxiety, and aggression. Sleep issues were significantly correlated with anxiety, self-abuse, conduct problems, and autistic-like behaviors. Problems with overall health, behavior, and balance most affected the number of social activities in the individual's life. Sensory impairment most affected relationships with friends. Two contrasting case studies are presented and demonstrate that the quality of life exists on a broad spectrum in CHARGE syndrome, just as its physical features range from mild to very severe. A multitude of factors, including those beyond the physical manifestations, such as anxiety and sleep problems, influence quality of life and are important areas for intervention. © 2016 Wiley Periodicals, Inc.