M White1, B Charbotel2, E Fort3, H Bastuji4, P Franco5, B Putois6, S Mazza7, L Peter-Derex8. 1. Claude Bernard Lyon 1 University, Lyon, France. 2. Claude Bernard Lyon 1 University, Lyon, France; Occupational Diseases Unit, Lyon Sud Hospital, Hospices Civils de Lyon, Lyon, France; Claude Bernard Lyon 1 University, IFSTTAR, UMRESTTE, UMR T_9405, F-69373, Lyon, France. 3. Claude Bernard Lyon 1 University, IFSTTAR, UMRESTTE, UMR T_9405, F-69373, Lyon, France. 4. Center for Sleep Medicine and Respiratory Diseases, Competence Center for Orphan Diseases, Narcolepsy and Rare Hypersomnia, Croix-Rousse Hospital, Hospices civils de Lyon, Lyon, France; Lyon Neuroscience Research Center, CNRS 5292 INSERM U1028, Lyon, France; Department of Functional Neurology and Epileptology, Neurological Hospital, Lyon, France. 5. Claude Bernard Lyon 1 University, Lyon, France; Lyon Neuroscience Research Center, CNRS 5292 INSERM U1028, Lyon, France; National Reference Center for Orphan Diseases, Narcolepsy and Rare Hypersomnia & Pediatric Sleep Center, HFME, Hospices civils de Lyon, Bron, France. 6. National Reference Center for Orphan Diseases, Narcolepsy and Rare Hypersomnia & Pediatric Sleep Center, HFME, Hospices civils de Lyon, Bron, France. 7. Claude Bernard Lyon 1 University, Lyon, France; HESPER (Health Services and Performance Research), EA 7425, Lyon, France. 8. Claude Bernard Lyon 1 University, Lyon, France; Center for Sleep Medicine and Respiratory Diseases, Competence Center for Orphan Diseases, Narcolepsy and Rare Hypersomnia, Croix-Rousse Hospital, Hospices civils de Lyon, Lyon, France; Lyon Neuroscience Research Center, CNRS 5292 INSERM U1028, Lyon, France. Electronic address: laure.peter-derex@chu-lyon.fr.
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.
OBJECTIVE/ BACKGROUND: To study educational and professional pathways of narcolepticpatients and examine demographic, disease-related and environmental factors associated with a better academic and professional prognosis. PATIENTS/ METHODS: In sum, 69 narcolepticpatients (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 narcolepticpatients, 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.