1009 Effectiveness and Satisfaction with Low-Sodium Oxybate as Described by Adults Living with Narcolepsy: LYRICAL Survey & Interview Findings

Abstract Introduction Low-sodium oxybate (LXB; Xywav®) is approved by the US Food and Drug Administration to treat cataplexy or excessive daytime sleepiness (EDS) in patients aged ≥7 years with narcolepsy. This longitudinal, mixed methods study (LYRICAL) examined participant-reported effectiveness and treatment satisfaction with LXB among US adults with narcolepsy. Methods Participants taking LXB for ≥12 weeks completed online surveys comprising standardized patient-reported outcome measures (including Patient Global Impressions of Change [PGIC], Patient Global Impressions of Severity [PGIS], and Treatment Satisfaction Questionnaire for Medication version 9 [TSQM-9]) and de novo items at three timepoints (enrollment, week 12, and week 24). A subset of participants completed qualitative interviews at enrollment and week 24. Data were analyzed descriptively. Results Fifty-nine participants with narcolepsy were enrolled with a mean age of 34.7 years (standard deviation [SD]=8.9) and mean 98.9 weeks (SD=73.4) on LXB. Most participants were female (91.5%), White (91.5%), and working full time (72.9%). After starting LXB, the percentage of participants taking alerting agents decreased from 89.8% to 67.8%. Most (93.0%) reported improvements in overall narcolepsy symptoms on the PGIC after initiating LXB. Symptom-specific PGICs indicated improvements in EDS (91.2%), feeling rested after nighttime sleep (87.7%), nighttime sleep quality (93.0%), sleep inertia (78.9%), and cataplexy (89.3%). High global satisfaction with LXB was reported (mean TSQM-9 score: 74.3); 86.0% reported being satisfied/extremely satisfied and 90.7% reported being somewhat/extremely confident that taking LXB was beneficial. Over 90% reported improved quality of life (QoL) compared with before LXB via PGIC, including ability to drive/exercise, improved focus, and better social life; improvements were maintained during the study. Interviewees (n=15) also described improvement or complete resolution of EDS (73.3%), improved sleep quality (73.3%), and found it easy to wake in the morning (73.3%). Further, interviewees reported that LXB exceeded their expectations, reiterated high satisfaction, and indicated they were very likely to continue LXB treatment. Conclusion Final results from the real-world LYRICAL study indicated that many adults with narcolepsy taking LXB experienced improvements in multiple daytime and nighttime symptoms, including EDS and nighttime sleep quality, improved QoL, and high treatment satisfaction; improvements were sustained over time. Support (if any) Jazz Pharmaceuticals