Mortality in narcolepsy and other sleep clinic patients: a 25-year propensity-matched VA cohort study

Prior research shows increased mortality in patients with narcolepsy compared to the general population; overall, the evidence remains highly controversial and comparative data with general sleep clinic populations remains limited.

We examined mortality and healthcare utilization among patients with narcolepsy compared to a general sleep clinic (GSC) cohort in the Veterans Affairs (VA) health system.

Retrospective cohort study.

Nationwide Veterans Health Administration (VHA) data from October 1999 through March 2025.

The study used relevant ICD-9/10 codes. We defined narcolepsy 1 (NT1) as patients with at least two NT1 ICD-9/10 codes. We constructed two propensity-matched (on age at index date, sex, race/ethnicity, and diagnosis year) comparison groups: (i) General Sleep Clinic (GSC; with no central disorders of hypersomnia ICD codes), matched 1:3 and (ii) other narcolepsy (ON) group as patients with at least two narcolepsy ICD-9/10 codes but no NT1-specific codes, matched 1:1 to NT1 group.

The primary outcome was all-cause mortality. Secondary outcomes included all-cause hospitalization and emergency department/urgent care (ED/UC) visits. Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were estimated using multivariable logistic regression in the propensity score-matched cohorts, with GSC as the reference group and adjustment for age, body mass index, and Charlson Comorbidity Index.

The cohort included 4161 NT1, 4161 ON, and 12,843 GSC participants. The mean age differed in the groups (48.0, 47.6, and 43.8 years for NT1, ON, and GSC, respectively). All-cause mortality was more frequent in NT1 and ON compared to GSC (24.7%, 29.1%, and 15.0% in NT1, ON, and GSC, respectively). Compared with GSC, aOR was higher in NT1 (aOR 1.64, 95% CI 1.47-1.82) and ON (aOR 2.40, 95% CI 2.16-2.66). In contrast, increased aOR of all-cause hospitalization was observed only in NT1 (aOR 1.13, 95% CI 1.05-1.22) compared to GSC.

Among veterans referred for sleep evaluation, adjusted OR of all-cause mortality was higher in narcolepsy patients compared to patients with other sleep disorders. The generalizability to non-VA populations remains uncertain. Future studies should identify cause-specific mortality and modifiable risk factors for prevention.

Question: In veterans referred for sleep evaluation, is narcolepsy associated with higher all-cause mortality than general sleep clinic patients?

In a retrospective propensity-matched cohort study of VA data (1999-2025) including 4161 NT1, 4161 other narcolepsy, and 12,843 general sleep clinic participants, mortality was 24.7%, 29.1%, and 15.0%; adjusted odds of mortality were significantly higher for NT1 (aOR 1.64) and other narcolepsy (aOR 2.40) vs. general sleep clinic. Meaning: These findings suggest elevated mortality risk in narcolepsy, highlighting the need for targeted prevention and risk-management strategies.