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Factors associated with diagnostic delay in narcolepsy: Real-world data from a Korean multicenter study.

Yu Jin Jung1, Ki-Hwan Ji2, Daeyoung Kim3

  • 1Department of Neurology, Kyung Hee University Hospital at Gangdong, College of Medicine, Kyung Hee University, Seoul, Republic of Korea.

Sleep Medicine
|June 22, 2025
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Summary

Narcolepsy diagnosis is delayed in Korean patients, linked to poor sleep quality and shorter holiday sleep duration. Reducing this delay is crucial for improving patient outcomes and quality of life.

Keywords:
Diagnostic delayNarcolepsyReal-world data

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Area of Science:

  • Neurology
  • Sleep Medicine
  • Epidemiology

Background:

  • Narcolepsy is a rare chronic neurological disorder with a characteristic symptom pentad.
  • Onset typically occurs in childhood or adolescence, but diagnosis is often delayed.
  • Understanding diagnostic delays in narcolepsy is critical for timely intervention.

Purpose of the Study:

  • To investigate the diagnostic delay in Korean narcolepsy patients.
  • To identify factors associated with prolonged diagnostic delays.

Main Methods:

  • Retrospective analysis of multi-center data from 137 Korean narcolepsy patients.
  • Inclusion of demographic, clinical, polysomnography, and multiple sleep latency test data.
  • Multivariable regression analysis to identify associated factors.

Main Results:

  • The mean age of symptom onset was 18.2 years and diagnosis was 28.3 years, indicating a significant delay.
  • Mean diagnostic delay was 10.3 years; median was 7.0 years.
  • Shorter holiday sleep duration, lower sleep efficiency, reduced N2 sleep, and lower SpO2 were associated with prolonged delays.

Conclusions:

  • Diagnostic delay for narcolepsy in Korea is substantial and linked to objective sleep quality metrics.
  • Addressing factors like shorter holiday sleep and poor nocturnal sleep may shorten diagnostic timelines.
  • Increased narcolepsy awareness through advocacy and education is vital to reduce disease burden and enhance patient quality of life.