Education Program in Myasthenia (MG-ETP)

University Hospital, Strasbourg, France

Status

Not yet enrolling

Conditions

Auto-immune Myasthenia

Treatments

Other: Therapeutic Education

Study type

Interventional

Funder types

Other

Identifiers

NCT04714658

7534 (Other Identifier)

Details and patient eligibility

About

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.

Enrollment

100 estimated patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

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