J Sleep Med.  2025 Apr;22(1):1-7. 10.13078/jsm.240026.

Daily Life Difficulties and Disease Awareness of Patients With Narcolepsy

Affiliations
  • 1Department of Neurology, Seoul National University Hospital, Seoul, Korea
  • 2Department of Neurology, Nowon Eulji Medical Center, Seoul, Korea
  • 3Department of Neurology, Seoul National University Hospital, Seoul National University College of Medicine, Seoul, Korea

Abstract


Objectives
Narcolepsy significantly affects the daily life of individuals due to excessive daytime sleepiness and cataplexy, reducing the quality of life and increasing the risk of accidents and social difficulties. Despite its profound impact on daily life, only a few studies have investigated the specific difficulties and awareness of patients with narcolepsy. Therefore, in this study, we aimed to assess the daily challenges and disease awareness of patients with narcolepsy. Methods: We conducted an online survey of 299 patients with narcolepsy. The survey included questions on patient demographics, clinical characteristics, difficulties, and disease awareness. Results: The patients reported considerable difficulties in academic performance, memory, and driving, with those with narcolepsy type 1 reporting greater difficulties than those with narcolepsy type 2. Older age and depression were positively associated with higher difficulty scores, whereas female sex was associated with lower difficulty scores. Notably, disease awareness varied, with 30.4% and 5.4% of participants showing moderate and no awareness of narcolepsy, respectively. Conclusions: Overall, this study highlights the daily life challenges and varying disease awareness of patients with narcolepsy. Our findings emphasize the need for targeted education and effective policy interventions to reduce the difficulties and improve the quality of life of patients with narcolepsy.

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