Evaluation of the Effectiveness of a Physical Activity Program on the Severity of Narcolepsy
Condition: Narcolepsy Type 1
MeSH terms: Narcolepsy
Study type: Observational

Summary: 
      Narcolepsy Type 1 (NT1) is a rare chronic neurological disorder resulting from the selective
      loss of hypocretin neurons. Patients with NT1 suffer from excessive daytime sleepiness,
      disrupted nighttime sleep, and cataplexy (emotionally triggered episodes of muscle atonia).
      The disease is associated with numerous comorbidities such as obesity, metabolic disorders,
      anxiety-depressive disorders, and attentional disorders, all of which have a strong impact on
      quality of life.
    

Detailed description: 
      Narcolepsy Type 1 (NT1) is a rare chronic neurological disorder resulting from the selective
      loss of hypocretin neurons. Patients with NT1 suffer from excessive daytime sleepiness,
      disrupted nighttime sleep, and cataplexy (emotionally triggered episodes of muscle atonia).
      The disease is associated with numerous comorbidities such as obesity, metabolic disorders,
      anxiety-depressive disorders, and attentional disorders, all of which have a strong impact on
      quality of life.

      Current management is based on sleep hygiene as well as wake-promoting and anti-cataplectic
      medications. However, many patients complain of residual sleepiness or cataplexy. In
      addition, most of the proposed treatments are accompanied by side effects and have little
      effect on the comorbidities associated with the disease. Therapeutic alternatives are
      therefore needed in the management of narcolepsy.

      Regular Physical Activity (RPA) is recommended by the World Health Organization (WHO) and has
      been shown to improve anxiety disorders, obesity, metabolic disorders, cognitive functions,
      sleep and quality of life.

      In NT1, patients have fewer opportunities to practice RPA because of daytime sleepiness as
      well as increased sleep needs. Some studies suggest that cardiorespiratory performances may
      be lower in NT1 patients than in healthy controls, and that a higher level of physical
      activity may be associated with lower sleepiness and better metabolic profile in NT1
      children. However, no prospective study has evaluated the feasibility of an exercise training
      program in NT1 or the effect of regular physical activity on disease severity.

      The main objective of the study is to evaluate the effect of a physical activity training
      program of 3 sessions per week for 6 weeks on the severity of narcolepsy in sedentary adults
      with NT1.

      The secondary objectives are to evaluate the feasibility of this program in an adult NT1
      population, the effect of the program on comorbidities (obesity, metabolic disorders,
      anxiety-depressive symptoms, cognitive disorders), medication dosage and quality of life, its
      tolerance, and the satisfaction of the patients at short- (6 weeks) and long-term (6 months).
    

Intervention name(s): Physical activity training program; Weekly phone call.; Personalized training plan.
Intervention type(s): Other; Other; Other
Intervention description(s): The physical activity training program will consist of 3 sessions per week for 6 weeks :
1 session will take place in the Sports Medicine Department of the Croix Rousse Hospital
2 sessions will take place remotely. They will be led by an educator in Adapted Physical Activity in live video-conference.; Patients included in the WL group will receive a weekly phone call for 6 weeks (waiting period), before starting the physical activity training program described above.; After the training program, patients of both groups will be given a personalized training plan to be followed for 4 months with regular phone call from the Adapted Physical Activity educator.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Adult patients with type 1 narcolepsy, sedentary, aged 18 to 65 years. The patients will be
        recruited from the active file of adult NT1 patients followed in the Sleep Center of the
        University Hospital of Lyon.
      
Keywords: Narcolepsy; Chronic neurological disorder; Regular physical activity