LAUSR

Narcolepsy is a disorder of hypersomnolence with intermittent periods of sleep, hallucinations, and sleep paralysis. Social listening (SL) analyzes real-world data on social media to provide information on disease symptoms and impacts to inform clinicians about a community’s unmet needs. This research used SL with a proprietary artificial intelligence (AI) engine, which leverages natural language processing (NLP) to understand experiences of people living with narcolepsy treated with sodium oxybate (SO), a twice-nightly medication. Using the proprietary AI engine to analyze text-based conversations, we evaluated 25,018 posts/comments from 15,280 participants which occurred from August 2011 to October 2022 from the subreddit r/Narcolepsy and a private Facebook group. Using a clinical entity recognition tagger, leveraging medicine ontology, conversations were filtered by mentions of (1) second dosage (e.g., second dose, 2nd) and (2) sodium oxybate (e.g., Xyrem, SO) to build a co-occurrence network for conversations discussing second doses of SO. Surveys and interviews were used to document patient SO experiences (Facebook, Discord channels, other networked contacts). Of 4275 subreddit users who mentioned SO, 398 (9.3%) communicated challenges with taking a second SO dose. The co-occurrence network revealed that second SO dose was co-mentioned with physical (e.g., nausea, headache) and mental (e.g., anxiety, depression, eating disorder) conditions. Of survey participants (N = 87 completed: patients, n = 85; caregivers, n = 2), 75% reported missing the second SO dose; effects included poor sleep quality, increased daytime sleepiness, mental health issues (especially depression), muscle spasms, work/school absences, and brain fog. Injuries resulting from waking to take the second dose (e.g., falls, stitches, concussions) were reported by 32%. Taking the second dose late (>4 hours after) was reported by 59% of patients. Effects of late dosing included grogginess, headache, and oversleeping, leading to school/work tardiness and missed responsibilities. When asked if a once-at-bedtime, premeasured SO dose would be safer, 76% of respondents agreed/strongly agreed. The second nightly SO dose is associated with sleep-related issues for people with narcolepsy and their caregivers. Both the SL analysis and survey revealed that a missed/delayed second dose of SO decreased daily functioning, quality of life, and physical health. Avadel Pharmaceuticals.