0764 Nighttime Symptom Experience and Treatment Challenges: Perspectives from People with Narcolepsy

Abstract Introduction Narcolepsy is a chronic sleep disorder characterized by daytime and nighttime symptoms. An anonymous survey was fielded and discussion groups were conducted to identify and describe common symptoms and daytime and nighttime challenges of people with narcolepsy (PWN) and to gain insights among those experienced with once-nightly sodium oxybate (ON-SXB) and oxybate-naive PWN. Methods MyNarcolepsyTeam members from the US were invited to complete a 47-question online survey (9/2022). Respondents selected ≥1 most troubling symptom from a 19-symptom list of patient-friendly terms. Separately, members were invited to participate in 1 of 2 online discussion groups (ON-SXB-experienced [7/2025]; oxybate-naive [9/2025]). Facilitator-led discussions were conducted using a structured guide. Results Of 109 respondents, 97% indicated narcolepsy impacted daily life a “great deal” or “a lot.” Symptoms reported as most troubling included excessive daytime sleepiness (90%); nighttime sleep disturbances (81%), including poor quality sleep (67%), disrupted/fragmented sleep (62%), insomnia (40%), or frequent awakenings (40%); vivid dreams (50%); sleep paralysis (31%); hallucinations (26%); and acting out dreams (24%). Most respondents (85%) desired treatments to improve sleep quality; however, only 64% had discussed nighttime treatment options with their clinician. Oxybates were the most frequent clinician-recommended nighttime treatment (69%). Of those currently taking oxybates (n=20), 55% were told they are the best medications for treating daytime and nighttime symptoms by their clinician. Respondents taking oxybates (n=20) were twice as likely to report satisfaction with their treatment regimen than those not taking oxybates (n=76; 70% and 37%, respectively). The separate, small discussion groups (ON-SXB, n=3; oxybate-naive, n=5) supported nighttime symptom burden experienced by PWN (ie, vivid dreams, sleep paralysis, fragmented sleep). Oxybate-naive PWN described challenges with daytime alertness following poor nighttime sleep and desired a treatment that would allow them to wake refreshed. Participants in the ON-SXB group desired a treatment that would allow them to sleep through the night and wake refreshed, which was achieved following ON-SXB initiation. Conclusion Nighttime symptoms including disrupted sleep, insomnia, and REM-related phenomena are common narcolepsy features. Not taking into account the experiences and needs of PWN throughout the 24-hour cycle, beyond daytime sleepiness, can result in unsatisfactory outcomes for patients. Support (if any) Avadel Pharmaceuticals