0592 Burden of Narcolepsy: A Survey of Patients and Physicians

Narcolepsy is a chronic neurologic disorder associated with impaired function and reduced quality of life. Surveys were designed to evaluate the perceptions of patients and health care providers (HCPs) regarding the burden, symptoms, and treatment of narcolepsy. Coordinated but separate online surveys of patients with narcolepsy and physicians who have treated patients with narcolepsy within the previous 2 years. Survey respondents included 200 patients with narcolepsy (69.0% female; 79.0% white; mean age, 46.5 years) and 251 physicians (45.0% board-certified sleep specialists). Although patients reported a range of negative impacts of narcolepsy on work/school performance, interpersonal relationships, social activities, and emotional well-being, many patients were not discussing with HCPs how narcolepsy affects their daily lives (39.9%) or how it affects them emotionally (50.0%). Most patients (87.5%) and physicians (92.0%) identified excessive daytime sleepiness as one of the most disruptive narcolepsy symptoms; however, only 12.5% of patients, compared with 70.5% of physicians, identified cataplexy as a disruptive symptom. Notably, although only 25.5% of patients reported cataplexy as a symptom, an additional 32.5% reported brief/mild muscular weakness triggered by emotions. The vast majority of physicians (93.6%) noted that people with narcolepsy unknowingly alter their lives to accommodate their symptoms; a much smaller percentage of patients (40.0%) reported avoiding social situations, and 20.0% reported avoiding strong emotions. Physicians reported that symptoms were completely or mostly under control in 27.5% of patients on average, whereas only 12.0% of patients reported this level of symptom control. Patients (88.0%) and physicians (94.0%) agreed that there is a need for better treatment options. Discrepancies between patients and physicians in survey responses suggest a need for better understanding of the burden of narcolepsy and improved HCP-patient communication. Additional unmet needs include improvement in physician and patient awareness of cataplexy and the development of additional effective treatment options. Harmony Biosciences, LLC.