Sleep problems are highly prevalent in the Angelman syndrome community across all genotypes and typically are characterized by difficulties falling asleep, frequent bouts of waking throughout the night, and an overall decrease in the amount of time spent sleeping.
Treatment typically utilizes medication to help alleviate sleep problems, however the work discussed here took a different approach and investigated the impact of a behavioral intervention program on sleep.
This study, performed by a team of researchers in the Netherlands, looked at sleep in children with AS, ages 2-18 years old using both parent-reported and objective outcome measures (Bindels-de Heus et al., 2023). A total of 18 AS individuals and families were assessed at baseline (before behavioral intervention) for sleep duration, sleep hygiene, quality of life measures (parent and individual), and parental stress. After this initial test of sleep, half of the group was randomized to a behavioral intervention program while the other half served as the control group.
Parents of the AS individuals assigned to the behavioral intervention program received an in-depth information packet discussing sleep problems followed by two in-home behavioral therapist visits designed to discuss baseline results and educate on sleep hygiene, bedtime routines, and sleep schedules. By the third week behavioral techniques were introduced to the behavioral intervention group and continued for 6-weeks with a booster at week eight and week ten. Parents of the AS individuals in the control group only received a written copy of their baseline assessment and general advice on sleep behavior. Sleep measures were assessed again at 12- and 26-weeks, to determine if a change could be detected and if it was persistent.
While the results showed some positive effect on certain sleep measures such as reduced wake time after sleep onset and sleep hygiene for those in the intervention group compared to controls, they were not overwhelmingly convincing that this rigorous of an intervention program is necessarily beneficial. However they do support the importance of education for parents and caretakers of individuals living with AS in helping develop and maintain health sleep schedules.