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. 2023 Nov 30:6:100095.
doi: 10.1016/j.sleepx.2023.100095. eCollection 2023 Dec 15.

Prevalence and incidence of narcolepsy symptoms in the US general population

Maurice M Ohayon  1 , Stéphanie Duhoux  2 , Joseph Grieco  2 , Marie-Lise Côté  3
Affiliations

Prevalence and incidence of narcolepsy symptoms in the US general population

Maurice M Ohayon et al. Sleep Med X. .

Abstract

Objective: The objectives of this study are to evaluate the prevalence and incidence of Narcolepsy type 1 and type 2 and to determine the prevalence of narcolepsy diagnosis criteria in the US general population.

Methods: This longitudinal study was conducted in the adult US general population in two occasions. The initial interviews included 15 states (Arizona, California, Colorado, Florida, Idaho, Missouri, New York, North Carolina, North Dakota, Oregon, Pennsylvania, South Dakota, Texas, Washington, and Wyoming). The follow-up interviews, was done three years later in eight of these states. Of the 19,136 contacted individuals, 15,929 completed the initial interview and 10,931 completed the follow-up. Participants were interviewed using the Sleep-EVAL system, an artificial intelligence tool. Narcolepsy Type 1 (with cataplexy) and Narcolepsy Type 2 (without cataplexy) were defined according to the ICSD-3 classification. Symptoms of narcolepsy were assessed by frequency per week and duration. Medical visits and diagnoses were also collected.

Results: Participants were aged between 18 and 102 years of age (mean 45.8 ± 17.9 years), 51.3 % were women. The prevalence of narcolepsy with cataplexy was 12.6 per 100,000 individuals (95 % C.I., 0 to 30) and narcolepsy without cataplexy was 25.1 per 100,000. The incidence per year was 2.6 per 100,000 individuals (95 % C.I., 0 to 11).

Conclusions: Narcolepsy is a rare condition affecting 37.7/100,000 individuals (126,191 individuals in the current US population). Our US general population prevalence is in line with rates found in community-based studies but lower than what is reported in claim database studies.

Keywords: Cataplexy; Hypersomnolence; Narcolepsy; Sleep paralysis.

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Conflict of interest statement

SD and JG are current employees of Tris Pharma. MMO is consultant for Tris Pharma and Takeda Pharmaceuticals. MMO has received grant from 10.13039/100004336Novartis. MLC has received grants from Jazz Pharmaceuticals, Takeda Pharmaceuticals and 10.13039/100004336Novartis.

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