Sleep health of adults and children with Moebius syndrome.

introductionMoebius 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.

methodsIn Phase 1, participants were 46 adults with Moebius Syndrome (M

resultsAdults 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.