Sleep health of adults and children with Moebius syndrome.

Introduction: 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.

Methods: In Phase 1, participants were 46 adults with Moebius Syndrome (M=33.5[13.0]; 72 % female) and 17 parent-proxies for children with Moebius Syndrome (child M=10.47[3.4]; 53 % female). Participants completed a self-reported questionnaire battery. In Phase 2, five adults (M=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.

Results: 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.

Discussion: 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.