LAUSR

Narcolepsy is characterized by excessive daytime sleepiness (EDS) and can occur with or without cataplexy. Oxybates are FDA-approved to treat EDS or cataplexy in people with narcolepsy. Immediate-release twice-nightly sodium oxybate (TN-SXB) and calcium, magnesium, potassium, and sodium oxybates (mixed-salt oxybates) are administered at bedtime and 2.5-4 hours later, whereas extended-release once-nightly SXB (ON-SXB; FT218) is administered once at bedtime. This study assessed oxybate awareness, usage, and experience among people with narcolepsy (PWN). The MyNarcolepsyTeam survey was an anonymous, voluntary survey conducted from April 10 to May 9, 2024. Eligible participants were age ≥21 years, United States residents, and reported a narcolepsy diagnosis. The 36-item survey assessed respondents’ demographics, symptom management, and relationships with healthcare providers (HCPs). Of 88 respondents, 77% were female, 75% were ≥50 years of age, and 39% and 50% had narcolepsy type (NT) 1 and NT2, respectively. Respondent brand awareness of oxybates was high (70%), with highest awareness for TN-SXB (55%), followed by mixed-salt oxybates (43%) and ON-SXB (23%). Of 82 respondents seeing an HCP, only 39% had discussed oxybates with their HCP. Current oxybate use was reported by 13% of respondents (15% of NT1 respondents; 7% of NT2 respondents), 82% of whom experienced symptom improvement within 2 weeks of starting oxybate treatment. Benefits of oxybate use included getting a better night’s sleep (64%) and waking up refreshed (64%). Of 77 respondents not currently taking oxybates, 36% reported they did not know enough about oxybates. Of respondents who had previously taken an oxybate, 28% discontinued within 1 month of initiating treatment. The most commonly reported reason for discontinuing oxybate treatment was side effects (40% [age ≥60 years, 47%; age < 60 years, 27%]). These results demonstrate that while respondents were moderately aware of oxybates, over one-third reported lacking enough information to consider starting oxybate treatment. Despite TN-SXB approval by the FDA in 2002, only 1:8 respondents were currently receiving oxybates. As narcolepsy medication regimens can be daunting, clinicians have the opportunity to counsel PWN about oxybate treatment options, including the potential for early symptom improvement and proactive side effect management to reduce discontinuation. Avadel Pharmaceuticals