Quality of Life in Patients With Congenital Afibrinogenemia
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 250
- 试验地点
- 28
- 主要终点
- The influence of the afibrinogenemia on the patients' quality of life assessed by the Haemo-QoL SF questionnaire (for children) and the Haem-A-QoL questionnaire (for adult)
研究概览
简要总结
The aim of this observational study is to evaluate the quality of life in patients with congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult patients.
详细描述
In this observational study, children and adults suffering from congenital afibrinogenemia confirmed by biology will be enrolled. All patients will receive a questionnaire on quality of life in their own language during a routine visit and filled out by the patient at home. A general questionnaire will be filled out by the patient's physician.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 8 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Congenital afibrinogenemia confirmed by biology (absence of circulating fibrinogen) and genotype
排除标准
- •Lack of participant's consent
- •Patient unable to understand the questionnaire
结局指标
主要结局
The influence of the afibrinogenemia on the patients' quality of life assessed by the Haemo-QoL SF questionnaire (for children) and the Haem-A-QoL questionnaire (for adult)
时间窗: At inclusion
The quality of life questionnaire includes item assessing: * Physical health * Feeling * View * Family * Friends * Others * Sport and school * Treatment * Perceived support * Dealing * Future * Relationship
次要结局
- Impact of the afibrinogenemic patient's clinical phenotype on the patients' quality of life(At Inclusion)
研究者
Casini Alessandro
MD
University Hospital, Geneva