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

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.

Acknowledgments

This paper is dedicated to the memory of Michel Westenberg.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was performed within the IMPULS framework of the Eindhoven MedTech Innovation Center (e/MTIC, a collaboration between Sleep Medicine Center Kempenhaeghe, Eindhoven University of Technology, and Philips Research), co-financed with a PPS supplement for research and innovation from the Dutch Ministry of Economic Affairs and Climate. UCB Pharma provided an unrestricted grant supporting the initial development of an early prototype of the Narcolepsy Monitor. UCB was not involved in any way in the design and execution of the work, data analysis, writing or decision to publish.