The Burden of Lupus in Canada From a Patient Perspective: A Canadian Real-World PROxy Study

PeriPharm88 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Lupus Lupus Arthritis Lupus Arthritis, Systemic Lupus Erythematosus Quality of Life (QOL)

Interventions

No Intervention: Observational CohortOTHER

No specific intervention is assess in this study. Observational cohort.

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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.

Locations (1)

PROxy Network, an initiative of PeriPharm Inc.

Montreal, Quebec, Canada

Outcomes

Primary Outcomes

To estimate quality of life of patients with lupus

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.

Time frame: At recruitment

Secondary Outcomes

To estimate work productivity impairment of patients with lupus.

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.

Time frame: At recruitment

Indirect Costs and Patients' Preference Questionnaire

Using a self-administered, 19-item questionnaires.

Time frame: At recruitment

Data from ClinicalTrials.gov

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