Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2026
Mortality in narcolepsy and other sleep clinic patients: a 25-year propensity-matched VA cohort study.
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Sharafkhaneh Amir, Dauvilliers Yves, BaHammam Ahmed S, Azarian Mehrnaz, Thorpy Michael, Han Fang, Senel Gulcin Benbir, Aksu Murat, Razjouyan Javad
Аннотация
IMPORTANCE: 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.
OBJECTIVE: 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.
DESIGN: Retrospective cohort study.
SETTING: Nationwide Veterans Health Administration (VHA) data from October 1999 through March 2025.
PARTICIPANTS: 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.
MAIN OUTCOMES AND MEASURES: 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.
RESULTS: 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.
CONCLUSIONS AND RELEVANCE: 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.
KEY POINTS: Question: In veterans referred for sleep evaluation, is narcolepsy associated with higher all-cause mortality than general sleep clinic patients?
FINDINGS: 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.
OBJECTIVE: 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.
DESIGN: Retrospective cohort study.
SETTING: Nationwide Veterans Health Administration (VHA) data from October 1999 through March 2025.
PARTICIPANTS: 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.
MAIN OUTCOMES AND MEASURES: 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.
RESULTS: 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.
CONCLUSIONS AND RELEVANCE: 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.
KEY POINTS: Question: In veterans referred for sleep evaluation, is narcolepsy associated with higher all-cause mortality than general sleep clinic patients?
FINDINGS: 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.