Grant: Project Grant

Systemic lupus (SLE) is a disease in which the immune system is over-active, causing inflammation in joints, skin, or any organ system. There are many areas where better approaches in SLE could improve outcomes. One example relates to hydroxychloroquine (HCQ), a key drug which can reduce the risk of serious disease flares. However there are increasing concerns about eye damage, the main side effect with long-term use of this drug. At present, we cannot precisely predict which SLE patient is most likely to flare once HCQ is tapered. Similarly, it is not clear what drives risk of eye damage. Our study will fill these knowledge gaps, and also add information about patient preferences for HCQ use. 1 To evaluate, among SLE patients who lower but do not discontinue HCQ, factors associated with a poor outcome, defined as a significant increase in disease activity, hospitalization for SLE flare, or increased therapy. 2 To determine, in SLE patients who discontinue HCQ, factors associated with a poor outcome, (significant increase in disease activity, increased therapy, or hospitalization for SLE flare). 3. To evaluate the relationship between HCQ use and occurrence of retinal toxicity in SLE patients, and how this may be associated with demographic and clinical characteristics. 4. To assess SLE patient preferences for HCQ therapy, and how preferences are associated with demographic and clinical factors, using interviews and a 'discrete choice' survey design. Our research will link and analyze data on 3,700 SLE patients across Canada.