Employment Masks Work Burden of Narcolepsy and Hypersomnia

Most people with narcolepsy and idiopathic hypersomnia (IH) stay employed, but many struggle at work and receive little workplace support, often without disclosing their condition to employers, according to a systematic review published in SLEEP Advances.¹

“Employment among people with narcolepsy or IH should not be interpreted as evidence of adequate functioning,” the authors wrote.

The review included 54 publications representing 51 studies identified through database searches from inception to March 31, 2024. Most were cross-sectional surveys, and studies were conducted largely in the United States and Europe, with data collected from the 1970s through 2023.

How Narcolepsy Affects Work Productivity

Across studies, most people with narcolepsy or IH were employed. However, roughly one-quarter reported losing or leaving a job because of their condition, the authors noted, though estimates varied widely across studies.

In a US study with a control group, people with narcolepsy reported missing 17.4% of work time in the previous week because of health problems, compared with 7.3% of controls. Presenteeism, or reduced productivity while working, was 40.2% vs 21.7%, and overall work impairment was 45.5% vs 24.8%. A separate US claims-based study found people with narcolepsy averaged 7.6 sick days per year vs 3.0 for controls.

Evidence in IH was more limited. Just 10 of the 51 studies included people with IH, and a US study without a control group reported 51.4% overall work impairment in this population.

Of 6 studies assessing symptom severity, 5 linked more severe symptoms to worse work outcomes, such as greater work impairment, lost workdays, or recognition of disability.

Disclosure and Accommodations Remain Limited

Some people reported using accommodations such as scheduled naps and control over their work schedules to cope with symptoms on the job. But the authors noted that employers can only provide accommodations when they know they are needed, and few studies reported how often people disclose their diagnosis.

In a French study, 38% of people with narcolepsy had informed their employer. In a small US study, 53% had not disclosed their condition to their employer.

The review authors attributed low disclosure in part to stigma and fear of discrimination, and noted that accommodations are often granted inconsistently when requested. They recommended that clinicians support accommodation requests and help educate employers about the disease.

A 2025 French multicenter study comparing 235 patients with narcolepsy type 1, the form of the disorder involving cataplexy, with 166 controls found no significant difference in employment rates between the groups (69.5% vs 77.0%).² Specific support at work was provided for 21% of patients, most often time and a place to nap, flexible organization, or schedule adaptation. Although 51.6% of patients felt accepted at work as a person with narcolepsy, 16% felt misunderstood and thought they were considered lazy. The authors concluded that most patients reach their career goals at the cost of investing more effort at work than they get back in rewards, and that cognitive and psychological comorbidities strongly shape professional outcomes.

Study Limitations and Industry Funding

The authors acknowledged substantial heterogeneity across studies.¹ Outcome definitions and measurement tools varied, few studies included control groups, and those that did often relied on friends, relatives, or hospital staff. Many studies had low or unreported response rates, and differences in labor markets and social policies across countries and decades limited comparability.

Fewer than half of the studies with control groups found statistically significant differences in employment and disability.

The review was funded by Takeda, and 4 of the 8 authors are Takeda employees. The remaining authors are employees of Cencora Global Consulting Services, which Takeda contracted to conduct the review. Takeda also funded medical writing support. The review protocol was not registered in a public database, which the authors noted may affect transparency.

The authors called for standardized measures of work outcomes, longitudinal research, and studies of how workplace policies and disability criteria shape outcomes for this population.

References

1. Ghosh S, Crawford S, Bermingham SL, et al. The impact of narcolepsy and idiopathic hypersomnia on work-related outcomes: a systematic literature review. Sleep Adv. 2026;7(3):zpag078. doi:10.1093/sleepadvances/zpag078
2. Peter-Derex L, Fort E, Putois B, et al. Effort/reward imbalance and comorbidities burden in academic and professional careers of patients with narcolepsy type 1. J Clin Sleep Med. 2025;21(6):983-997. doi:10.5664/jcsm.11598