What question did this study set out to answer?

To characterize real-world experiences of narcolepsy patients, focusing on diagnosis, treatment, and unmet needs.

May 10, 2026

0761 Waking Up to Modern Decision-Making: Integrating Patient Perspectives into Narcolepsy Management

Puntos clave

To characterize real-world experiences of narcolepsy patients, focusing on diagnosis, treatment, and unmet needs.
Administered a 31-item online survey to patients with self-reported narcolepsy.
Data were collected in September 2025, with 99 patient responses analyzed.
Participants were recruited through Wake Up Narcolepsy and received a small honorarium.
76% of patients were misdiagnosed, commonly with depression or anxiety.
90% reported excessive daytime sleepiness as the most challenging symptom to manage.
Only 27% felt their treatment regimen fully met their needs.

Resumen

Abstract Introduction Narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2) present with heterogeneous symptoms beyond excessive daytime sleepiness (EDS), contributing to delayed diagnosis and functional impairment. Given variable symptoms and an expanding therapeutic armamentarium, management of narcolepsy remains highly individualized. To better characterize real-world experiences, including diagnostic pathways, treatment patterns, and unmet needs, a patient survey was conducted. Methods A 31-item online survey was administered in September 2025. Participants with self-reported narcolepsy were recruited through Wake Up Narcolepsy. A small honorarium was provided. Responses were aggregated and analyzed for incorporation within a CME activity. Results Data were obtained from 99 patients (68% NT1; 31% NT2; 86% female, 61% aged 25-44). Prior to diagnosis, all patients experienced EDS and most reported disrupted nighttime sleep (DNS; 79% NT1, 77% NT2) and cognitive challenges (81% NT1 and NT2). Hallucinations and sleep paralysis were more common in NT1 (~60%) but prevalent in NT2 (45% and 26%, respectively). Most patients (76%) were initially misdiagnosed, most commonly with depression (56%), anxiety (49%), and/or attention-deficit/hyperactivity disorder (35%). These were also the most frequently reported comorbidities, present in 45%, 52%, and 40% of respondents. Many patients (40% NT1, 52% NT2) consulted 4 providers before receiving a formal diagnosis. The most challenging symptoms to manage were EDS (90%), cognitive dysfunction (72%), and DNS (40%). Common treatments included stimulants (41%), solriamfetol (25%), pitolisant (23%), and low sodium oxybate (22%). Only 27% felt their regimen fully met their needs, although 42% reported “a lot” of improvement. Only 13% felt their provider fully understood symptom impacts on daily life. Profound challenges in psychosocial functioning were noted in NT1 and NT2, particularly difficulty concentrating or expressing thoughts (90%), memory problems (84%), and difficulty maintaining social relationships (68%). Just 19% reported being connected with support groups by their healthcare team. Conclusion Symptom misattribution and comorbidities are common in narcolepsy, emphasizing a need for enhanced clinical vigilance. Despite treatment, patients experience significant residual cognitive and psychosocial burden and often feel misunderstood, yet they are infrequently connected to support groups by clinicians. Results underscore the need for enhanced patient-centered management. Support (if any) Supported by educational grants from Harmony Biosciences and Jazz Pharmaceuticals

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