Determinants of Health Status and Quality of Life in Patients With Primary Immunodeficiencies Inhereted Diagnosed During Childhood
试验速览
- 阶段
- 不适用
- 入组人数
- 1,780
- 试验地点
- 1
- 主要终点
- Numbers of patient with PID diagnosed during childhood experiencing a heavy burden of health conditions affecting their quality of life
研究概览
简要总结
Background: Most children with primary immune deficiency (PID) now reach adulthood. However, few studies have evaluated their health status and health related quality of life (HRQoL).
Objective: To investigate long-term morbidity, the French Reference Center for PIDs initiated a prospective multicenter cohort: the F-CILC (French Childhood Immune deficiency Long-term Cohort). The data collected will be used to assess the physical health condition of patients who reached adulthood and the impact on their quality of life.
Methods: Patients are asked to complete health status questionnaires. A severity score (grade1 ["mild"] to grade 4 ["life-threatening"]) is assigned to each health condition. The HRQoL of patients is compared to age- and sex-matched French normal values using the SF36 HRQoL questionnaire.
Capsule summary. This will be the first study of adult survivors of childhood PID describing how the burden of health conditions affect their quality of life.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patient with primary immune deficiency diagnosed during childhood
排除标准
- •Patients not willing to answer to quality of life questionnaires
结局指标
主要结局
Numbers of patient with PID diagnosed during childhood experiencing a heavy burden of health conditions affecting their quality of life
时间窗: 3 years
次要结局
未报告次要终点