NCT04714658

Education Program in Myasthenia

Efficiency of a Therapeutic Patient Education Program in Myasthenia Gravis

• Status: Unknown
• Phase: N/A
• Study type: Interventional
• Enrollment: 100 (estimated)
• Sponsor: University Hospital, Strasbourg, France · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

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.

Conditions

• Auto-immune Myasthenia

Interventions

Type	Name	Description
OTHER	Therapeutic Education	Each patient will participate in 1 to 3 PTE sessions. 1. st group collective workshop : allow the patient to better understand autoimmune 2. nd workshop : fatigue and techniques that enable its best management. 3. 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.

Timeline

• Start date: 2021-01-22
• Primary completion: 2025-05-22
• Completion: 2025-05-22
• First posted: 2021-01-19
• Last updated: 2021-01-19