The Burden of Lupus in Canada From a Patient Perspective: A Canadian Real-World PROxy Study
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 88
- 试验地点
- 1
- 主要终点
- To estimate quality of life of patients with lupus
研究概览
简要总结
This study aims to capture the Canadian patient experience, burden, barriers, and treatment preferences. The findings will generate real-world evidence to support patient-centered care and guide healthcare providers, researchers, and decision-makers in improving support and treatment for people living with lupus.
详细描述
Lupus Canada will distribute an invitation to participate in the study through their mailing list, website, social networks providing a link to the questionnaire. Their mailing list database comprises about 8,000 individuals, including patients. Lupus Canada will reach out to the lupus community to inform them about their eligibility to participate in the study. Those meeting the eligibility criteria will be invited to sign the informed consent form (ICF) and complete all the study questionnaires on the PROxy web-based platform. For any questions, interested participants will have access to the contact information of the PROxy team, and a designated team member will communicate with participants by phone to answer all questions.
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
- 否
入选标准
- •18 years of age or older;
- •Part of the Lupus Canada database;
- •a. Self-identified as a patient with Lupus.
- •Ability to read and understand English or French;
- •Signature of informed consent form.
排除标准
- •1. Participation in an interventional clinical trial for Lupus.
研究组 & 干预措施
Patients with lupus
Adult patients with lupus member of Lupus Canada database
干预措施: No Intervention: Observational Cohort (Other)
结局指标
主要结局
To estimate quality of life of patients with lupus
时间窗: At recruitment
Using the 36-item Short Form (SF-36) questionnaire, a generic health-related quality of life questionnaire containing 8 domains. Each domains score ranges from 0 to 100, where 0 represents poor health and 100 best possible health.
次要结局
- To estimate work productivity impairment of patients with lupus.(At recruitment)
- Indirect Costs and Patients' Preference Questionnaire(At recruitment)