Education Program in Myasthenia

Study Overview
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Brief Summary
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Patient therapeutic education (PTE) has become a must in the modern management of chronic diseases. Its main objective is to improve compliance with treatment and the application of preventive measures. The main goal of this study is to assess the influence of the therapeutic education program on the perception of the disease in patients with autoimmune myasthenia. Secondary objectives are to assess quality of life, patient satisfaction of the PTE program, the acquisition of therapeutic goals and the influence of therapeutic education on the evolution of autoimmune myasthenia Study team hypothesize that therapeutic education could improve the patient's perception of myasthenia and its quality of life. By improving patient's adherence to treatments and his knowledge of the disease, it could also improve the evolution of myasthenia gravis. Study team suppose that PTE program can reduce the absenteeism at work, the number and duration of hospitalizations, particularly those in intensive care units.

Official Title
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Efficiency of a Therapeutic Patient Education Program in Myasthenia Gravis

Conditions
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Auto-immune Myasthenia

Intervention / Treatment
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* Other: Therapeutic Education


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient with generalized autoimmune myasthenia with Acetylcholine Receptor Antibodies (AChR Ab) or with antibodies to the muscle-specific receptor tyrosine kinase (MuSK Ab) Patient agreeing to participate in the therapeutic education program Signing consent Subject affiliated with a health insurance social protection regiment Exclusion Criteria: Patients without serological confirmation of myasthenia or pure ocular form Patient with cognitive impairment or behavioral problems that, in the investigator's opinion, will compromise their ability to comply with study procedures Refusal of the patient to participate in the study Patient who has already benefited from the therapeutic education program in myasthenia Age < 18 y.o. Subject under safeguarding justice Subject under guardianship or under curatorship

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Immediate PTE<br> | Other: Therapeutic Education<br>* Each patient will participate in 1 to 3 PTE sessions. st group collective workshop : allow the patient to better understand autoimmune nd workshop : fatigue and techniques that enable its best management. rd workshop : improving the management of the emotions generated by myasthenia. It allows patients to express their experiences of the disease in front of a group, to talk about their difficulties in their relationships and mobilize their resources to promote exchanges.<br>|
| Other: 6-month deferred PTE<br> | Other: Therapeutic Education<br>* Each patient will participate in 1 to 3 PTE sessions. st group collective workshop : allow the patient to better understand autoimmune nd workshop : fatigue and techniques that enable its best management. rd workshop : improving the management of the emotions generated by myasthenia. It allows patients to express their experiences of the disease in front of a group, to talk about their difficulties in their relationships and mobilize their resources to promote exchanges.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Brief Illness Perception Questionnaire |  | 6 month after the first visit |