NCT03641261已完成不适用
Evaluation of the Feasibility and Effect of Therapeutic Education Sessions Using an Internet Application in Hereditary Ichthyosis
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 42
- 试验地点
- 2
- 主要终点
- Global use
研究概览
简要总结
The main purpose is to evaluate the feasibility (global use) of a therapeutic patient education program using a specific web application in patients with hereditary ichthyosis.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 15 Years 至 60 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patient with hereditary ichthyosis, according to the classification established during the 2009 consensus conference
- •Who has given his informed consent form
- •Who is affiliated to a social security system
排除标准
- •Patient who has already participated in a therapeutic patient education program for the hereditary ichthyosis
- •Unable to connect or use a computer tool
- •Impossibility to be present at the only face-to-face session
- •Patient who is not available for the collective educational session
- •Patient with little or no motivation to follow a therapeutic patient education program (motivation evaluated by the educational team by phone call before inclusion)
- •Patient not mastering the French language
- •Person under legal protection (guardianship, curators or safeguard of justice)
结局指标
主要结局
Global use
时间窗: 6 months
percentage of patients who have used the "WebIchtyose" application for at least 8 hours during 6 months
次要结局
- Fractional use in each domain (educational sessions)(6 months)
- Number of lost to follow-up patients(9 months)
- Patient acceptability(6 months)
- Educational team acceptability(6 months)
- Coping scale(Inclusion and 6 months)
- Fractional use in each domain (questionnaires)(6 months)
- Difficulties of use in everyday life by the patient(6 months)
- Response time(6 months)
- Knowledge about disease and treatments(Inclusion and 6 months)
- Number of relaunches(2 months, 4 months and 6 months)
- Fractional use in each domain (continuous educational follow-up)(6 months)
- Difficulty of individual application registration(Baseline)
- Number of non-received questionnaires(2 months, 4 months and 6 months)
- Attractiveness(6 months)
- Quality of life before and after treatment(Inclusion, 6 months and 9 months)
- Self-assessment of cutaneous severity(Inclusion and 6 months)
- Self-care skills(Inclusion and 6 months)
- Self-esteem(Inclusion and 6 months)
- Fractional use in each domain (consultation)(6 months)
- Fractional use in each domain(6 months)
- Number of exchanges(3 months and 5 months)
研究者
研究点 (2)
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