Background Lupus flares can be associated with increased damage, poor outcomes and decreased health-related quality of life. Patients and providers may differ about the nature of a flare, however, complicating communication and management. Herein, we explored patient and physician descriptions of lupus flares.

Methods We conducted a qualitative descriptive study using in-depth interviews with a purposeful sample of SLE patients (1997 ACR or SLICC criteria) selected for age, race, sex and nephritis; we also interviewed a range of rheumatologists. Interviews were audio-recorded and transcribed. The data were analyzed using applied thematic analysis by a team of qualitative analysts and rheumatologists.

Results We interviewed 42 SLE patients (mean age 45, 93% female, 52% Black, 52% college educated, 15 mean years of disease, 33% historical nephritis). The majority of patients described flare symptoms as joint pain, fatigue, and rashes. Other common symptoms included swelling, myalgias, mood disturbance and flu-like symptoms. Several patients noted brain fog and weakness as flare symptoms. One patient included nephritis and one noted lab abnormalities as signs of flare. According to patients, the majority of flares lasted a matter of days although some quantified flare length as weeks or months. Patients considered stress as the most common trigger.

Thirteen rheumatologists (mean age 54, 53% Female, 61% non-Hispanic White, mean 25 practice years) from 10 academic and 3 community centers were interviewed. All rheumatologists cared for SLE patients; half had a SLE clinical focus and 75% conducted SLE research. The majority of rheumatologists defined flare as an increase in disease activity, with more than half requiring objective findings while a few incorporated a change in therapy. Around half of rheumatologists included fatigue, pain or patient reported symptoms as part of a lupus flare; however, another 2 specifically excluded patient-reported symptoms. A few rheumatologists acknowledged patient and physician discordant views.

Conclusion Together, these data suggest that patients and physicians have different views of flares. Patients view flares as short-lived periods of fatigue, myalgia and arthralgia often prompted by stress. Providers view flares as an objective increase in lupus inflammation requiring immunosuppression. Appreciating this discrepancy is important since patients could misinterpret their rheumatologist’s assessment. Moreover, discounting the patient experience could impair the patient-physician relationship with implications for adherence and outcomes. Further study is needed to understand the immunologic basis of patient flares and determine the best approach to incorporate the patient perspective into clinical assessments and management.