Narcolepsy is a chronic, disabling, and rare sleep disorder (prevalence 1/2500) characterized by excessive daytime sleepiness and, in some patients, falls in muscle tone related to emotions (cataplexies). It often begins in childhood or in young adults. Symptoms of narcolepsy are responsible for an important handicap in everyday life, and are often misunderstood by the family and professional environment. In addition, many comorbidities are associated with narcolepsy, such as depression, anxiety, or obesity. Few studies have investigated the impact of narcolepsy on patients' academic background, socio-professional integration, and quality of life. Narcoleptic patients may experience more difficulties in their academic and professional path than non-narcoleptic people. These difficulties would be multifactorial (related to the disease itself, comorbidities, external factors ...). As a better understanding of these determinants could help to inform patients and guide them in their choices, this study propose to establish a comprehensive inventory of educational and professional trajectories of narcoleptic patients in France in order assess the specificity of the difficulties encountered by the people concerned in their life course and to appreciate the attitude of the academic and professional circle with respect to the disease. This category 3 study (according to the French law "Loi Jardé") is based on the case-control model and will be conducted in all National Reference and Competence Centers for Narcolepsy and Hypersomnia. It will include a population of adult and paediatric patients. It will answer questions about work and schooling in these patients.
Study Type
OBSERVATIONAL
Enrollment
1,605
Patients and case control will have to respond to the study questionnaire on the online entry platform to compare the distribution of socio-professional categories. Answering the questionnaires will take 45 minutes.
Patients and case control will have to respond to the study questionnaire on the online entry platform to compare the proportion of subjects having repeated grades. Answering the questionnaires will take 45 minutes.
Centre de médecine du Sommeil CHU d'Angers
Angers, France
Service d'Explorations Fonctionnelles du Système Nerveux, Clinique du Sommeil, CHU de Bordeaux Groupe Hospitalier Pellegrin
Bordeaux, France
Unité de sommeil pédiatrique - Hôpital femme Mère Enfant - Hospices civils de Lyon
Bron, France
Service de neurophysiologie clinique CHU de Dijon
Dijon, France
Service de physiologie et Exploration fonctionnelle - Unité du Sommeil Hôpital Raymond Poincarré
Garches, France
Service de Neurophysiologie Clinique, Hôpital Roger Salengro
Lille, France
Centre de Médecine du Sommeil et des Maladies respiratoires - Centre Hospitalier de la Croix Rousse - Hospices Civils de Lyon
Lyon, France
Service de neurophysiologie clinique - centre du sommeil - Hôpital de la Timone
Marseille, France
Service de Neurologie - Troubles du Sommeil Hôpital Gui de Chauliac
Montpellier, France
Laboratoire d'Explorations Fonctionnelles Neurologiques, CHU de Nantes
Nantes, France
...and 8 more locations
For adult : distribution of professional situations
Distribution of professional situations in narcoleptic adult patients and related non-narcoleptic topics (employed, unemployed, student, retired, housewife/husband). (data collection form "professional situation").
Time frame: 45 minutes (time to answering the questionnaire)
For children : proportion of children who repeated a grade
Proportion of children who repeated a grade in narcoleptic children and non-narcoleptic control children ("school status" data collection form).
Time frame: 45 minutes (time to answering the questionnaire)
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