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

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.