Abstract Details

Title Burden of Narcolepsy: A Survey of Patients and Physicians

Topic Sleep

Presentation(s) P3 - Poster Session 3 (5:30 PM-6:30 PM)

Poster/Presentation
Number 7-036

Objective To evaluate the perceptions of patients and health care providers (HCPs) regarding the burden, symptoms, and treatment of narcolepsy.

Background Narcolepsy is a chronic, debilitating disorder characterized primarily by excessive daytime sleepiness (EDS) and cataplexy.

Design/Methods Coordinated but separate online surveys of patients with narcolepsy and physicians who have treated patients with narcolepsy within the previous 2 years.

Results 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 EDS 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.

Conclusions 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.

Authors/Disclosures
Michael J. Thorpy, MD (Montefiore Medical Center) PRESENTER	Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jazz. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avadel. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for alkermes. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Harmony. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for centessa. Dr. Thorpy has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Axsome. Dr. Thorpy has received publishing royalties from a publication relating to health care.
	No disclosure on file
Albena I. Patroneva, MD (Harmony Biosciencesw)	Dr. Patroneva has nothing to disclose.

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