Patients With Narcolepsy Experience Significant Burden of Disease

Patients with narcolepsy type 1 (NT1) not only have problems sleeping, but these issues can extend to the rest of their life, affecting their overall quality of life. Posters presented during the Sleep 2026 Annual Meeting presented data on disease burden in patients with NT1, showing how the condition can affect patients across the board.

NT1 is a rare disorder that is caused by the loss of orexin neurons. The symptoms can include disrupted nighttime sleep, excessive daytime sleepiness, and cognitive symptoms. Although treatment is available, some of these symptoms can continue even after treatment is initiated.

Clinical and Humanistic Burden of NT1 Remains High Despite Treatment

A poster presented at the Sleep 2026 Annual Meeting examined the clinical and humanistic burden of NT1, looking at both symptom severity and the disease's broader impact on patients' daily lives to identify unmet needs in this population. The researchers used a cross-sectional online survey to conduct the study. Individuals with NT1, narcolepsy type 2, or idiopathic hypersomnia could participate in the survey. Demographics, cognitive challenges, symptoms, disease severity, and impacts were all collected, with the Epworth Sleepiness Scale (ESS) and Narcolepsy Severity Scale for Clinical Trials (NSS-CT) both being used for measurement.

There were 247 participants with NT1 who were included in this study, of whom 74.9% were women, and the median (IQR) age was 40 (31-49) years. The most frequently reported comorbidities were depression (53.1%), anxiety (55.7%), and back pain (56.2%). A total of 87.2% of the participants had taken medication for narcolepsy in the previous 30 days.

The median ESS score was 16 (12-19), which indicated severe excessive daytime sleepiness. Taking daily naps (75.1%) and fatigue (92.9%) were frequently reported as a result. A total of 77.0% had cognitive challenges, and 84.5% reported cataplexy. The median NSS-CT score was 23.5 (16-31), which indicated moderate to severe disease. A total of 68.9% reported at least 1 hallucination per year, and 55.3% reported having experienced at least 1 episode of sleep paralysis per week. Disturbed nighttime sleep was experienced by nearly all of the participants at 91.2%.

Overall the researchers concluded that patients with NT1 still experience symptoms that significantly affect their lives despite management of the disease.

NT1 Has Socioeconomic Effect on Patients

A second poster also focused on how NT1 affects the quality of life of patients with the disease, specifically focusing on various parts of the life domain in patients living in the US. The same survey in the previous poster was utilized in this study, with this survey adding the 5-level EQ-5D alongside the ESS. Symptoms, demographics, education, and employment were also collected.

The same 247 participants with NT1 were included in this study. The mean (SD) EQ-5D utility score was 0.61 (0.30), which broke down to 0.64 (0.29) for normal daytime sleepiness and 0.53 (0.32) for excessive daytime sleepiness. A total of 45.3% of the participants had a university degree, and 55.3% were employed. Work disruption was reported in 81.5% of the participants due to their NT1 diagnosis. Difficulty concentrating (73.6%), sleepiness (87.3%), and fatigue (89.1%) were the primary reasons that participants reported work disruption. Sick leave was reported by 35.6% of the participants in the past 3 months. Disability benefits were provided to 45.9% of those unemployed, and 57.0% needed assistance from a caregiver.

The researchers concluded that NT1 posed a significant burden on patients living with the disease. In particular, work capacity is severely limited in these patients, which requires disability benefits and caregivers to supplement their quality of life.

References

1. Jönsson L, Morse A, Lavelle T, et al. Holistic symptom burden among individuals with narcolepsy type 1 in the United States. Presented at: Sleep 2026 Annual Meeting; June 14-17, 2026; Baltimore, MD. Abstract 727.
2. Jönsson L, Morse A, Lavelle T, et al. Impact of narcolepsy type 1 on quality of life, employment, and socioeconomic burden: results from a US cross-sectional survey. Presented at: Sleep 2026 Annual Meeting; June 14-17, 2026; Baltimore, MD. Abstract 728.