Academic and professional paths of narcoleptic patients: the Narcowork study

Sleep Med. 2020 Jan:65:96-104. doi: 10.1016/j.sleep.2019.07.020. Epub 2019 Aug 2.

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: In sum, 69 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 < 0.0001), and had needed more educational reorientation (28.6% vs 9.9%, p = 0.01). Even if no difference was observed in occupational category and professional status, patients expressed significantly less satisfaction about their work. Patients had more signs of depression [OR severe depression = 4.4 (1.6-12.6), p = 0.02] and their quality of life was significantly decreased (67.3 ± 18.4 vs 80.6 ± 13.2, p = 0.0007) as compared to controls. Multivariate analysis showed that a more favorable professional career was associated with a better quality of life.

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 reassure patients and should lead to a more comprehensive management of the disease.

Clinical trial registration: Narcowork, https://clinicaltrials.gov/ct2/show/NCT03173378, N° NCT03173378.

Keywords: Education; Narcolepsy; Quality of life; School; Work.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Career Choice*
  • Cross-Sectional Studies
  • Depression / psychology*
  • Educational Status*
  • Female
  • Humans
  • Male
  • Narcolepsy / diagnosis*
  • Narcolepsy / psychology
  • Pilot Projects
  • Psychiatric Status Rating Scales
  • Quality of Life / psychology*
  • Surveys and Questionnaires

Associated data

  • ClinicalTrials.gov/NCT03173378