Grant: Project Grant

Systemic Lupus (SLE) is a chronic disease that often affects visible minorities and young women. SLE causes great health burdens, including early death and huge social and economic costs. In SLE, the immune system is over-active, causing inflammation in joints, skin, or any organ system. SLE is a leading cause of death in Black and Hispanic young women. Hydroxychloroquine (HCQ) is a key drug which can reduce the risk of serious disease flares. However, there are increasing concerns about drug-related eye damage, which is the main side effect of long-term HCQ use. There are also possible effects on the heart. People with SLE have a hard time balancing the risks and benefits of stopping or continuing HCQ. All rheumatologists in the world prescribe HCQ on a daily basis, but they do not have evidence on how to best use it. Our aim is to fill these gaps. To do so, we will: (1) Review and summarize published studies on SLE flares and side effects, (2) Measure patients' preferences and choices regarding treatment options and see if these preferences differ by patients' age, sex, and other factors (3) Develop recommendations to guide optimal HCQ use in SLE. (4) Create a decision aid for patients to use with their doctors, about HCQ use. If we know what matters most to patients, taking into account their disease history, characteristics and preferences, we can then help all SLE patients, regardless of sex/gender, race/ethnicity, or other factors, to benefit from shared decision-making and improved outcomes.