Sex disparities in clinical features and burden of narcolepsy type 1

To investigate potential sex-related differences in patients with narcolepsy type 1 (NT1), we carried out an analysis of baseline data from 93 women and 89 men with NT1 who participated in the TElemedicine for NARcolepsy (TENAR) trial. The following data were considered: sociodemographics, diagnostic (disease history, polysomnography, orexin, HLA) and clinical features including sleepiness (Epworth Sleepiness Scale, ESS), cataplexy and other narcolepsy symptoms, disease severity (Narcolepsy Severity Scale, NSS), pharmacological treatment, depressive symptoms (Beck Depression Inventory, BDI), and self-reported relevance of 8 narcolepsy-related issues. We found that, compared with men, significantly more women reported automatic behaviors (55.4% vs. 40%) and had higher ESS (median 10 vs. 9) and BDI scores (median 10.5 vs. 5), and there was a trend for a higher NSS total score in women (median 19 vs. 18, p=0.057). More women than men were officially recognized as having a disability (38% vs. 22.5%) and considered 5/8 narcolepsy-related issues investigated as a relevant problem. More severe sleepiness and a greater narcolepsy-related burden in women could mirror sex differences present in the general population, or may be related to suboptimal management of NT1 or to more severe depressive symptoms in women. Future studies and guidelines should address these aspects.