Residual Cataplexy Common in Treated Narcolepsy Type 1, CRESCENDO Survey Finds

Residual cataplexy was common among adults with narcolepsy type 1 (NT1) who were receiving FDA-approved narcolepsy medication and was associated with greater symptom burden and poorer quality of life, according to a subgroup analysis of the CRESCENDO survey presented at SLEEP 2026.

Among 203 treated adults with NT1 included in the analysis, 156 respondents, or 76.8%, reported residual cataplexy. Compared with respondents who reported no residual cataplexy, those with residual cataplexy reported greater cognitive impairment, more depressive symptoms, greater excessive daytime sleepiness, and broader functional burden affecting work, school, relationships, and social activity.

What is residual cataplexy in narcolepsy type 1?

Cataplexy is a core feature of NT1 and is characterized by sudden episodes of muscle weakness, often triggered by strong emotion. Although it is a defining symptom of NT1, investigators noted that cataplexy may be underrecognized and can impose meaningful limitations on daily life. The CRESCENDO survey was designed to evaluate the experience of treated adults with NT1, with this subgroup analysis focused on patients who continued to experience cataplexy despite current treatment.

How common was residual cataplexy in the survey?

CRESCENDO was developed in partnership with the Narcolepsy Network and conducted by a third-party research firm from October to December 2023. The survey included adults diagnosed with NT1 who were currently taking FDA-approved narcolepsy medication.

Residual cataplexy was reported by most respondents. Those with residual cataplexy were older than those without residual cataplexy, with a median age of 42.0 vs 38.0 years. They also were more likely to identify as White (76.3% vs 51.1%) and female (70.5% vs 42.6%).

Polypharmacy was more common among respondents with residual cataplexy than among those without residual cataplexy, at 65.4% vs 44.7%, respectively. Patients with residual cataplexy also were more likely to report current antidepressant use (42.9% vs 23.4%) and less likely to report current oxybate treatment (42.3% vs 61.7%).

What symptom burden was associated with residual cataplexy?

Respondents with residual cataplexy reported higher scores for subjective cognitive impairment, depressive symptoms, and excessive daytime sleepiness. Mean British Columbia Cognitive Complaints Inventory score was 9.1 in the residual cataplexy group vs 5.2 in the no residual cataplexy group. Mean Patient Health Questionnaire-8 score was 10.5 vs 7.0, and mean Epworth Sleepiness Scale score was 13.6 vs 8.9.

The residual cataplexy group also more frequently self-reported other ongoing symptoms, including excessive daytime sleepiness (94.9% vs 78.7%), brain fog (87.2% vs 44.7%), and depression (50.0% vs 29.8%).

How did residual cataplexy affect quality of life?

Functional burden was greater among respondents with residual cataplexy. Cognitive symptoms were more likely to interfere with work or school (92.9% vs 83.0%), relationships with family or friends (80.8% vs 61.7%), and enjoyment of social activities (88.5% vs 66.0%). Nearly half of respondents with residual cataplexy reported very or extreme difficulty with work, home, or social life related to depressive symptoms, compared with 34.0% of those without residual cataplexy.

For clinicians, the findings suggest that asking whether cataplexy persists may not be enough. Patients with treated NT1 who report residual cataplexy may also warrant assessment for excessive daytime sleepiness, cognitive complaints, brain fog, depressive symptoms, and functional impairment.

Investigators concluded that residual cataplexy remains common among treated adults with NT1 and is associated with substantial symptom and quality-of-life burden. The findings point to an unmet need for additional treatment options and more comprehensive symptom assessment in patients with NT1.

Reference

1. Symptom burden and quality of life in patients with narcolepsy who experience residual cataplexy: subgroup analysis from the CRESCENDO survey. Abstract 0702. Presented at: SLEEP 2026; June 2026.