Burden of Disease and Living Situation in Desmoid Patients
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 100
- 试验地点
- 1
- 主要终点
- Health-related Quality of Life (EORTC C30)
研究概览
简要总结
The main aim of the study is to assess the situation and quality of life of desmoid patients. Impaired areas of quality of life and the associated factors are to be identified. The survey is planned as a cross-sectional study (patient survey).
Prevalent and incident desmoid patients will be identified at the University Hospital Mannheim and checked for eligibility. Quality of life and patient-reported data are collected by means of written questionnaires. Medical data is collected from patient files in the clinics. The aim is to include 100 patients. Descriptive analyses of the variables collected and regression models are planned as statistical analysis.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Prospective
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
- •Desmoid diagnosis (primary neoplasia, all stages)
- •Age ≥18 years at diagnosis
排除标准
- •Inability to complete a structured questionnaire (insufficient language skills; dementia)
结局指标
主要结局
Health-related Quality of Life (EORTC C30)
时间窗: baseline
Health-Related Quality of Life Questionnaire
次要结局
- The Brief Pain Inventory (BPI)(baseline)
- Reintegration to Normal Living (RNL) Index(baseline)
- Supportive Care Needs Survey(baseline)