The Burden of Narcolepsy in Adults: A Population Sampling Study Using Personal Media

L. Quaedackers*, M. M. Van Gilst, I. Van Den Brandt, A. Vilanova, G. J. Lammers, P. Markopoulos, S. Overeem

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

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Objective: To obtain insight in the spectrum of narcolepsy symptoms and associated burden in a large cohort of patients. Methods: We used the Narcolepsy Monitor, a mobile app, to easily rate the presence and burden of 20 narcolepsy symptoms. Baseline measures were obtained and analyzed from 746 users aged between 18 and 75 years with a reported diagnosis of narcolepsy. Results: Median age was 33.0 years (IQR 25.0–43.0), median Ullanlinna Narcolepsy Scale 19 (IQR 14.0–26.0), 78% reported using narcolepsy pharmacotherapy. Excessive daytime sleepiness (97.2%) and lack of energy were most often present (95.0%) and most often caused a high burden (79.7% and 76.1% respectively). Cognitive symptoms (concentration 93.0%, memory 91.4%) and psychiatric symptoms (mood 76.8%, anxiety/panic 76.4%) were relatively often reported to be present and burdensome. Conversely, sleep paralysis and cataplexy were least often reported as highly bothersome. Females experienced a higher burden for anxiety/panic, memory, and lack of energy. Conclusions: This study supports the notion of an elaborate narcolepsy symptom spectrum. Each symptom’s contribution to the experienced burden varied, but lesser-known symptoms did significantly add to this as well. This emphasizes the need to not only focus treatment on the classical core symptoms of narcolepsy.

Original languageEnglish
Pages (from-to)179-189
Number of pages11
JournalBehavioral Sleep Medicine
Volume22 (2024)
Issue number2
Publication statusPublished - 2023

Bibliographical note

Green Open Access added to TU Delft Institutional Repository ‘You share, we take care!’ – Taverne project Otherwise as indicated in the copyright section: the publisher is the copyright holder of this work and the author uses the Dutch legislation to make this work public.


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