Evaluation of Academic and Professional Trajectories of Narcoleptic Patients

NCT03173378 | Completed

• 1 other identifier: 69HCL17_0252
• Study Type: observational
• Target: 149
• Locations: 1 country
• Sites: 1

Brief Summary

Narcolepsy is a chronic, disabling condition 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 examined the impact of narcolepsy on patients' educational background, socio-professional integration, and quality of life. In particular, the factors of professional handicap related to the characteristics of the disease and the determinants of the insertion of the patients remain poorly known. As a better understanding of these determinants could help to inform patients and guide them in their choices, NARCOWORK study aims at evaluating the academic and professional trajectories of a wide population of narcoleptic patients.

Conditions

Narcolepsy

Outcome Measures

Primary Outcomes (1)

• Occupational situations

  Participants will have to complete questionnaires to compare the distribution of occupational situations subjects (worker, unemployed, student, retired, housewife) in narcoleptic patients and matched non-narcoleptic subjects (controls)

  30 to 45 minutes

Study Arms (2)

Narcoleptic Patients

Type 1 and Type 2 narcoleptic adult patients usually followed at the Lyon Sleep Medicine and Respiratory Disease center

Other: Questionnaires

Control

Adult age-matched family members of the patients

Other: Questionnaires

Interventions

Questionnaires OTHER

Participants will have to complete questionnaires to compare the distribution of occupational situations in narcoleptic patients and matched non-narcoleptic subjects (controls)

Control; Narcoleptic Patients

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Type 1 and Type 2 narcoleptic patients and adult age-matched family members of the patients (1 or 2 control per patient)

You may qualify if:

• Group "Narcoleptic Patients":
• Type 1 or Type 2 narcolepsy
• \> 18 years
• Usually followed at the Lyon Sleep Medicine Center
• Group "Control":
• At least one member of each family of cases (siblings, cousins ...)
• \> 18 years and of the same age as the case if possible (+/- 5 years)
• No narcolepsy

You may not qualify if:

• uncertain diagnosis (for the "Narcoleptic Patients" Group)
• poor knowledge of the French language
• Refusal to participate

Sponsors & Collaborators

• Hospices Civils de Lyon: lead

Study Sites (1)

Sleep Medicine Center, Croix-Rousse Hospital, Hospices Civils de Lyon

Lyon, 69004, France

Location

Related Publications (1)

• White M, Charbotel B, Fort E, Bastuji H, Franco P, Putois B, Mazza S, Peter-Derex L. 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.

  PMID: 31739232 DERIVED

MeSH Terms

Conditions

Narcolepsy

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Disorders of Excessive Somnolence; Sleep Disorders, Intrinsic; Dyssomnias; Sleep Wake Disorders; Nervous System Diseases; Mental Disorders

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: May 30, 2017
• First Posted: June 1, 2017
• Study Start: October 3, 2017
• Primary Completion: July 10, 2018
• Study Completion: July 10, 2018
• Last Updated: November 28, 2018

Record last verified: 2018-11

Locations

FR (1)