Prevalence and incidence of narcolepsy in a US health care claims database, 2008-2010

Sleep. 2019 Jul 8;42(7):zsz091. doi: 10.1093/sleep/zsz091.


Study objectives: To determine the prevalence and incidence of narcolepsy using a large US health care claims database.

Methods: The Truven Health MarketScan Commercial Dissertation Database (THMCDD) was used to estimate prevalence and incidence of narcolepsy, with and without cataplexy, by age groups, gender, and region among patients under age 66 years with continuous enrollment for years 2008-2010. THMCDD contains health claims information for more than 18 million people. Prevalence was expressed as cases/100 000 persons. Average annual incidence (using varying criteria for latency between the diagnostic tests, polysomnograph coupled with multiple sleep latency test [MSLT], and the diagnosis) was expressed as new cases/100 000 persons/year.

Results: There were 8 444 517 continuously enrolled patients and 6703 diagnosed with narcolepsy (prevalence overall: 79.4/100 000; without cataplexy: 65.4/100 000; with cataplexy: 14.0/100 000). On the basis of the three definitions of incidence, overall average annual incidence was 7.67, 7.13, and 4.87/100 000 persons/year. Incidence for narcolepsy without cataplexy was generally several times higher than narcolepsy with cataplexy. Prevalence and incidence were approximately 50% greater for females compared to males across most age groups. Prevalence was highest among the 21-30 years age group, with incidence highest among enrollees in their early 20s and late teens. Regionally, the North Central United States had the highest prevalence and incidence, whereas the West was the lowest.

Conclusion: We found greater prevalence and incidence of narcolepsy (including without cataplexy) than most previous studies. The increased proportions in females, enrollees in their early 20s, and US regional differences require further study. Increased awareness and early identification is critical in the management of this burdensome condition.

Keywords: database; health claims; incidence; narcolepsy; prevalence; region.

MeSH terms

  • Adolescent
  • Adult
  • Cataplexy / diagnosis
  • Cataplexy / epidemiology*
  • Databases, Factual
  • Diagnosis, Differential
  • Female
  • Humans
  • Incidence
  • Male
  • Middle Aged
  • Narcolepsy / diagnosis
  • Narcolepsy / epidemiology*
  • Polysomnography
  • Prevalence
  • United States / epidemiology
  • Young Adult