Efficiency of a Therapeutic Patient Education Program in Myasthenia Gravis
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 发起方
- 入组人数
- 100
- 主要终点
- Brief Illness Perception Questionnaire
研究概览
简要总结
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
Brief Illness Perception Questionnaire
时间窗: 6 month after the first visit
次要结局
未报告次要终点