Sleep health of adults and children with Moebius syndrome

Moebius syndrome is a rare congenital disorder with frequent anecdotal reports of sleep disturbances not sufficiently categorized by prior literature. The present mixed-methods, two-phase study aimed to characterize the sleep health and symptoms of a cohort of adults and children (via parent proxies) with Moebius syndrome.

In Phase 1, participants were 46 adults with Moebius Syndrome (M_age=33.5[13.0]; 72 % female) and 17 parent-proxies for children with Moebius Syndrome (child M_age=10.47[3.4]; 53 % female). Participants completed a self-reported questionnaire battery. In Phase 2, five adults (M_age=25.4[6.5]; 100 % female) from Phase 1 completed 2 weeks of sleep diary and actigraphy, 2 nights of single-channel EEG, and diagnostic and qualitative interviews.

Adults endorsed elevated rates of self-reported sleep disorder symptoms including sleep apnea (26 %), insomnia (56 %), nightmares (35 %), excessive daytime sleepiness (30 %), cataplexy (26 %), REM sleep behavior disorder (61 %), and parasomnias (100 %). Children had elevated rates of sleep disturbances (71 %), sleep-related daytime impairment (82 %), parasomnias (76 %) and daytime sleepiness (53 %). Qualitative interviews revealed participants endorsed a history of sleep problems dating to childhood and continuing into adulthood that impacted social relationships and quality of life and had experienced little treatment success.

These findings shed light on the constellation of sleep health experiences among individuals with Moebius syndrome. Poor sleep health may represent a modifiable treatment target to improve health and well-being in individuals with Moebius syndrome. The heterogenous nature of sleep problems among people with Moebius syndrome may not respond well to a one-size-fits-all intervention, instead necessitating personalized approaches.