The Burden of Narcolepsy in Adults

A Population Sampling Study Using Personal Media

Journal article (2023)

Authors

L. Quaedackers Sleep Medicine Center Kempenhaeghe, Eindhoven University of Technology
Merel Van Gilst Sleep Medicine Center Kempenhaeghe, Eindhoven University of Technology
I. Van Den Brandt Eindhoven University of Technology
A. Vilanova Bartroli Computer Graphics and Visualisation - EEMCS , Eindhoven University of Technology
G. J. De Leiden University Medical Center, Stichting Epilepsie Instellingen Nederland
P. Markopoulos Sleep Medicine Center Kempenhaeghe, Eindhoven University of Technology
Sebastiaan Overeem Sleep Medicine Center Kempenhaeghe, Eindhoven University of Technology
Research Group
Computer Graphics and Visualisation (EEMCS) (TU Delft)
Copyright: © 2023 L. Quaedackers, M. M. Van Gilst, I. Van Den Brandt, A. Vilanova Bartroli, G. J. Lammers, P. Markopoulos, S. Overeem
DOI
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https://doi.org/10.1080/15402002.2023.2217971
More Info
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Published Date

2023

Language

English

Reuse Rights

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Faculty

Electrical Engineering, Mathematics and Computer Science

Department

Intelligent Systems

Research Group

Computer Graphics and Visualisation

Abstract

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.