Lupus, Lupus Arthritis, Lupus Arthritis, Systemic Lupus Erythematosus, Quality of Life (QOL)
Conditions
Keywords
lupus, quality of life, real-world
Brief summary
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.
Detailed description
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.
Interventions
OTHERNo Intervention: Observational Cohort
No specific intervention is assess in this study. Observational cohort.
Sponsors
PeriPharm
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
1. 18 years of age or older; 2. Part of the Lupus Canada database; a. Self-identified as a patient with Lupus. 3. Ability to read and understand English or French; 4. Signature of informed consent form.
Exclusion criteria
1\. Participation in an interventional clinical trial for Lupus.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| To estimate quality of life of patients with lupus | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| To estimate work productivity impairment of patients with lupus. | At recruitment | Using the Work Productivity and Activity Impairment (WPAI) questionnaire. This questionnaire provides a quantitative measure of impairment over the last 7 days and includes four metrics: absenteeism (work time missed because of health issues during the past 7 days), presenteeism (impairment while working due to health issues during the past 7 days), overall work productivity loss (combination of absenteeism and presenteeism), and activity impairment. |
| Indirect Costs and Patients' Preference Questionnaire | At recruitment | Using a self-administered, 19-item questionnaires. |
Countries
Canada
Outcome results
None listed