A Qualitative Exploration of Patient and Healthcare Provider Perspectives on Oxybate Treatments for Narcolepsy

OBJECTIVES: To describe patient and healthcare provider (HCP) perspectives regarding characteristics of oxybate treatments for narcolepsy.

METHODS: One-on-one, semi-structured, qualitative telephone interviews lasting approximately 45 minutes were conducted with patients and HCPs recruited from national opt-in survey panels. Eligible patients were aged ≥18 years who self-reported a physician diagnosis of narcolepsy and have been taking an oxybate treatment for ≥3 months. HCPs must have been board-certified or board-eligible with a specialty/subspecialty in sleep medicine; managed ≥5 narcolepsy patients and prescribed ≥3 patients an oxybate treatment for narcolepsy in the past 6 months. Thematic analysis of verbatim transcripts was conducted to identify key themes.

RESULTS: Eight patients (median age, 45 years) and seven HCPs (median years in practice, 25) were interviewed December 2023. Four patients were taking low-sodium oxybate and four patients were taking high-sodium oxybate. HCPs managed median 50 patients with narcolepsy in the past 6 months. Patients noted their oxybate treatment helped them fall asleep, stay asleep, wake up feeling rested, and reduced symptoms (e.g., daytime sleepiness). Sodium content was important to most patients given potential long-term health consequences. HCPs reported that efficacy is the primary treatment consideration followed by sodium content. All HCPs interviewed preferred prescribing a low-sodium oxybate to patients with cardiovascular disease or other underlying health risks where excess sodium is a concern. Among the most important treatment characteristics reported by HCPs and patients, symptom relief emerged as most important; sodium content and dosing frequency were also considered important while side effects were not a key consideration.

CONCLUSIONS: Effective symptom relief was the leading consideration for HCPs when selecting an oxybate treatment for patients with narcolepsy, followed by sodium content. Symptom relief also emerged as an important treatment characteristic for patients; dosing frequency and sodium content were among other key considerations.