Academic and professional paths of narcoleptic patients: the NARCOWORK study

Abstract Objective /background: To study educational and professional pathways of narcoleptic patients and examine demographic, disease-related and environmental factors associated with a better academic and professional prognosis. Patients/Methods Sixty-nine narcoleptic patients (51 narcolepsy type 1 and 18 narcolepsy type 2, age 42.5+/-18.2 years) were enrolled in this pilot monocentric cross-sectional study with a comparison group (80 age- and sex-matched controls) between October 2017 and July 2018 in Lyon Center for Sleep Medicine. They completed questionnaires about their academic and professional trajectories and specific scales of quality of life (EuroQol quality of life scale EQ-5D-3L), depression (beck depression inventory, BDI), sleepiness (Epworth Sleepiness Scale, ESS) and narcoleptic symptoms severity (narcolepsy severity scale, NSS). Results No difference in grade repetition or final obtained diploma was observed between patients and controls, but patients evaluated their academic curricula as more difficult (45.5% vs 16.9%, p=0.0007), complained for more attentional deficits (75% vs 22.1%, p Conclusions Educational and professional pathways do not seem to be significantly impaired in narcoleptic patients, but their experience and quality of life are affected. These findings may allow to reinsure patients and should lead to a more comprehensive management of the disease. Clinical trial registration Narcowork, https://clinicaltrials.gov/ct2/show/NCT03173378 , N° NCT03173378.