The mean Epworth Sleepiness Score for patients with a narcolepsy diagnosis who participate in the Nexus Narcolepsy Registry was 15.5, according to an abstract presented at the SLEEP 2016 meeting.
The abstract “Functioning, Productivity and Health-Related Quality of Life (HRQOL) in People with Narcolepsy: First Wave Results From the Nexus Narcolepsy Registry” also found that 38.9% of registry participants reported experiencing excessive daytime sleepiness without cataplexy and 57.5% experienced cataplexy.
Twenty-nine percent of participants reported being unemployed, with two-thirds of those attributing leaving their job to the sleep disorder. For those working, the participants reported missing on average 7.7 hours of work per week due to narcolepsy. “The entire sample reported an average 63.4% impairment in regular daily activities other than work,” the researchers wrote, concluding: “Participants report substantial impact on functioning, productivity and QoL related to their condition.”