Practical Guidance for Initiation and Management of Patients on Once-Nightly Sodium Oxybate for Narcolepsy Treatment: Modified Delphi Panel Consensus Recommendations

Introduction: Despite its strong recommendation for treatment of excessive daytime sleepiness (EDS), cataplexy, and disease severity associated with narcolepsy by the American Academy of Sleep Medicine, sodium oxybate (SXB) remains underutilized. Once-nightly SXB (ON-SXB) is an extended-release formulation of SXB approved for treatment of cataplexy or EDS in patients 7 years of age and older with narcolepsy. ON-SXB has only been commercially available since 2023; thus, additional practical clinical recommendations may be helpful. Methods: Seven advanced practice providers (APPs) who practice sleep medicine were invited to participate in a modified Delphi panel to develop practical recommendations for the management and initiation of ON-SXB in patients with narcolepsy. Panelists addressed six themes: managing expectations and patient education, dosing and titration, discontinuation and adherence, transitioning from twice-nightly oxybates (TN-OXB), polypharmacy, and sodium. Panelists first answered open-ended questions, then met virtually to discuss responses and seek consensus. Topics not reaching consensus were fielded to the panelists via iterative rounds of questionnaires and virtual meetings. Results: Panelists recommended that clinicians set expectations for treatment, side effects, and frequent communication with oxybate-naive patients. Indicators of medication discontinuation (e.g., missed follow-up appointments, late/missed refills, patients needing “coaching” to continue medication) were identified. For patients switching from TN-OXB, questions were proposed to determine effects of the second nightly dose on the patient and family/partner. After determining readiness to modify concomitant narcolepsy treatments, stimulants were recommended as the first medication to adjust. Consensus was achieved that discussions about sodium should be relevant to the patient’s existing cardiovascular risk and occur in the context of the benefits of consolidated sleep. Conclusion: APPs have a unique and pragmatic experience in treating people with narcolepsy. Delphi consensus recommendations drawn from their experience may inform the approach to ON-SXB use in narcolepsy and help clinicians optimize patient care.