Study Finds People with Systemic Autoimmune Rheumatic Diseases like Systemic Lupus Erythematosus Identify Disease Flares Differently than Clinicians

A new study comparing perspectives about disease flares in people with systemic autoimmune rheumatic diseases (SARD), like systemic lupus erythematosus (SLE), and clinicians found differences in how each recognizes a flare, especially in how quickly they begin and how they are identified. A lupus "flare" or "flare up" is when your lupus symptoms worsen, and you feel ill as a result. Lupus is a chronic autoimmune disorder characterized by these unpredictable disease flares and remissions (when symptoms improve).

Researchers used a combined survey and interview approach. Qualitative analysis involved 31 people with SARD and 12 clinicians, while quantitative analysis involved 443 people with SLE and 258 clinicians. Results showed important differences between people with SLE and clinicians in how they view flares, with interviews from people with other SARDs providing additional context. Both groups agreed that flares can greatly reduce quality of life. However, among people with SLE, they disagreed on 12 of 17 flare-related statements, especially about how quickly flares start, how they are identified, and whether they require medical care. People with SLE were more likely to say flares can start within minutes or hours and that they can recognize a flare, including early warning symptoms. Clinicians were more likely to believe flares require new or increased medication.

Differences in flare interpretation can affect care and clinical research and show the limits of relying only on biomarkers or disease activity scores. The gaps suggest flare assessment should include both people’s experiences and clinician measures, not just disease activity scores and biomarkers. People with SARD need support throughout a flare, including help identifying triggers and managing symptoms. Clinicians should listen to and document patient-reported flares, even when tests show little objective evidence. Learn more about what is a lupus flare. 

Read the study