Abstract Introduction As targeted treatments for narcolepsy type 1 (NT1) emerge, timely diagnosis and care planning are essential to optimize outcomes. This ongoing initiative aims to identify and address barriers to NT1 recognition and treatment to support practice improvements and patient-centered care. Methods Patient surveys (N=38) were collected in August 2025 through collaboration with the Hypersomnia Foundation to inform an ongoing initiative at five US sleep centers. Results from patient surveys are reviewed at expert-led clinic-based sessions to identify patient needs in care, and case-based discussions challenge participants to apply the latest evidence into practice scenarios. Pre- and post-session surveys are designed to measure the impact on knowledge, confidence, and self-reported performance. Additionally, clinicians will develop strategies for care improvement. Results The top patient-reported barriers to NT1 diagnosis were finding a provider familiar with sleep disorders (42%) and limited appointments/referrals (26%). Ninety-five percent waited over 1 year for formal diagnosis (1-5 years, 71%; 5-10 years, 19%; 10 years, 5%). Narcolepsy symptoms had a significant impact on daily living (82%; 4 or 5 on a 5-point Likert scale), with many patients reporting fatigue (63%), excessive daytime sleepiness (58%), disrupted nighttime sleep (53%), sleep paralysis (50%), and cataplexy (37%) despite treatment. Patients’ top treatment goals were finding a treatment that is effective for their symptoms/type of narcolepsy (61%) and that improves daily functioning/quality of life (55%). However, 19% (1, 2, or 3 on a 5-point Likert scale) reported their care team had not discussed treatment options and 37% (1, 2, or 3 on a 5-point Likert scale) were not routinely asked about treatment goals. Patients were interested in discussing the cause of narcolepsy (63%) and their preferences for treatment (61%). Preliminary findings from the clinic-based sessions have generated practical strategies to address identified gaps in NT1 care. Conclusion Patient surveys uncovered persistent challenges in NT1 diagnosis, communication, and treatment planning. Incorporating these perspectives and case-based scenarios into clinic-based sessions have the potential to improve focused approaches to care and can provide a foundation for integrating evidence into practice as the NT1 landscape evolves. Support (if any) This program was supported by an educational grant from Takeda Pharmaceuticals U.S.A., Inc.
Corser et al. (2026) studied this question.