Characterizing disrupted nighttime sleep and associated functional outcomes in youth with narcolepsy type 1

Disrupted nighttime sleep and sleep instability are common in children and adolescents with narcolepsy type 1, but optimal objective sleep measures have not been determined. We compared self-reported and objective sleep measures between young people with narcolepsy type 1 and healthy controls and test the hypotheses that the wake/non-rapid eye movement sleep stage 1 (N1) index is the best objective measure of perceived nocturnal wakings vs other disrupted nighttime sleep measures reported in the literature and is associated with daytime functional problems.

n = 26 healthy controls and n = 27 narcolepsy type 1 participants ages 8-21 years completed a 15-item habitual sleep quality survey and an in-lab polysomnogram. We compared group survey responses and performed stepwise regression of sleep quality and instability measures with a survey question ("During the night, I wake more than once"). Last, we used logistic regression to identify associations between the wake/N1 index with daytime functional concerns across groups.

Compared to healthy controls, narcolepsy type 1 participants reported more frequent restless sleep, nighttime moaning/groaning/talking, tossing and turning, and nocturnal wakings (all P values < .01), but no greater difficulties in falling asleep or returning back to sleep. Across groups, self-reported waking from sleep was associated with increased wake/N1 index and selective serotonin reuptake inhibitor/selective norepinephrine re-uptake inhibitor use. The wake/N1 index was associated with daytime fatigue but no other behavioral or cognitive concerns.

Disrupted nighttime sleep is a multifactorial complaint that differs from insomnia. We believe the wake/N1 index is a useful sleep instability measure that should be helpful in research and as a treatment target in clinical practice, especially for fatigue concerns.

Heckler G, Worhach J, Wang G, et al. Characterizing disrupted nighttime sleep and associated functional outcomes in youth with narcolepsy type 1. J Clin Sleep Med. 2025;21(2):355-363.