The Burden of Multiple Myeloma on Patients and Caregivers Quality of Life: a Canadian Real-World Study
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 400
- 试验地点
- 1
- 主要终点
- To estimate quality of life of patients with myeloma and caregivers of patients with myeloma
研究概览
简要总结
The purpose of this observational study is to estimate the burden of multiple myeloma on patients and caregivers in terms of QoL. Additionally, this study will assess the correlation between QoL, obtained from commonly used and validated questionnaires, and the perceptions of both patients and caregivers respectively., obtain from a 10-point scale and a comment box.
详细描述
Potential participants will be identified by Myeloma Canada using their database. Myeloma Canada is a registered non-profit organization created by, and for, Canadians impacted by multiple myeloma. As part of Myeloma Canada website, patients and caregivers can subscribe to a mailing list to receive their monthly newsletter and to participate in surveys. This database comprises about 5,000 individuals, including patients and caregivers.
An e-mail will be sent to 600 patients and 200 caregivers randomly selected to invited them to participate in the survey. Interested participants will be invited to visit the Participant Portal on the PROxy website (https://periproxy.com/en), to sign the informed consent form and complete online questionnaires. Upon request, paper-based documents (i.e., informed consent form and questionnaires) can also be sent by mail. The following questionnaires will be used:
Patients
- Patient Information Questionnaire (i.e., baseline characteristics)
- EORTC QLQ-C30
- EORTC QLQ-MY20
- EQ-5D-5L
- ESAS-R
- Patients Perspective
Caregivers
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
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •18 years of age or older;
- •Part of the Myeloma Canada database;
- •Identified as a patient with MM or
- •Identified as a current caregiver of a patient with MM at the time of participation.
- •Ability to read and understand English or French;
- •Signature of informed consent form (ICF).
排除标准
- •No exclusion criteria
结局指标
主要结局
To estimate quality of life of patients with myeloma and caregivers of patients with myeloma
时间窗: From enrollment until sample size is reached
次要结局
- To assess the correlation between QoL scores and perception of patients and caregivers respectively(From recruitment until sample size is reached)