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

doi:10.1080/15402002.2023.2217971

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

L. Quaedackers (Corresponding author), M.M. Van Gilst, I. Van Den Brandt, A. Vilanova, G.J. Lammers, P. Markopoulos, S. Overeem

Research output: Contribution to journal › Article › Academic › peer-review

2 Citations (Scopus)

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.

Original language	English
Pages (from-to)	179-189
Number of pages	11
Journal	Behavioral Sleep Medicine
Volume	22
Issue number	2
Early online date	29 May 2023
DOIs	https://doi.org/10.1080/15402002.2023.2217971
Publication status	Published - Mar 2024

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. This paper is dedicated to the memory of Michel Westenberg.

Funders	Funder number
Sleep Medicine Centre Kempenhaeghe
Ministerie van Economische Zaken en Klimaat
Eindhoven University of Technology

Keywords

Adolescent
Adult
Aged
Anxiety
Cataplexy/diagnosis
Disorders of Excessive Somnolence
Female
Humans
Middle Aged
Narcolepsy/diagnosis
Sampling Studies
Young Adult

Access to Document

10.1080/15402002.2023.2217971

Cite this

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title = "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.",

keywords = "Adolescent, Adult, Aged, Anxiety, Cataplexy/diagnosis, Disorders of Excessive Somnolence, Female, Humans, Middle Aged, Narcolepsy/diagnosis, Sampling Studies, Young Adult",

author = "L. Quaedackers and {Van Gilst}, M.M. and {Van Den Brandt}, I. and A. Vilanova and G.J. Lammers and P. Markopoulos and S. Overeem",

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AU - Quaedackers, L.

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AU - Vilanova, A.

AU - Lammers, G.J.

AU - Markopoulos, P.

AU - Overeem, S.

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AB - 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.

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

Abstract

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Keywords

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Sleep Medicine

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

Abstract

Funding

Keywords

Access to Document

Other files and links

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Research areas

Sleep Medicine

Cite this