Abstract Introduction Treatment options for idiopathic hypersomnia (IH) are limited. Oxybate treatment experiences and preferences of people with IH were characterized using survey data. Methods Surveys were fielded in 2 phases to respondents recruited from Facebook and Reddit (1/23/2025-3/19/2025) and from Rare Patient Voice members and patients who were provided the link by their clinician (7/28/2025-8/5/2025). Respondents were required to live in the US, be aged ≥18 years, report clinician-diagnosed IH, and be currently/previously receiving an oxybate. Results Fifty respondents (female, 96%; age range, 19-66 years) completed the survey. Mean and median time from symptom onset to diagnosis was 10 and 13 years, respectively (range, 1-37 years). When considering IH treatment, ability to reduce frequency/intensity of excessive daytime sleepiness; improve general health, intellectual functioning, and/or mood; and improve the transition from sleep to wake were rated ≥7 on a 9-point scale (1=not important; 9=extremely important) by 84%, 74%, and 64% of respondents, respectively. Immediate-release (IR) calcium/magnesium/potassium/sodium oxybates was the most common current/previous oxybate taken (84%), followed by IR sodium oxybate (24%); 4% of respondents had previously taken both. IR oxybates were most often prescribed as a twice-nightly regimen (72%); 12% of respondents were prescribed a single IR oxybate dose; 16% were prescribed both single and twice-nightly regimens at some point. Of respondents taking twice-nightly doses, 72% took equal first and second doses (total nightly dose: 4.5 g, 6%; 4.5-5.9 g, 19%; 6-7.4 g, 8%; 7.5-9 g, 39%), 25% took asymmetric doses, and 1 did not recall their dose. Of 30 respondents (60%) who accidentally missed their second oxybate dose, 47% missed ≥1 dose/week. Consequences of missed doses were extreme sleepiness, brain fog, migraines, and functional impairment. Respondents reported mistimed doses: 36% took their second dose 4 hours and 10% took their second dose 2.5 hours after the first dose. More than two-thirds of respondents agreed or strongly agreed that a single, premeasured, extended-release bedtime dose of sodium oxybate would be safer/more convenient than current treatment options. Conclusion These survey data from people with IH identified delayed diagnoses, challenges with IR oxybates, and a desire for extended-release, once-nightly sodium oxybate. Support (if any) Avadel Pharmaceuticals
Carter et al. (Fri,) studied this question.