Patient and physician perspectives of systemic lupus erythematosus flare: A qualitative study.

Systemic lupus erythematosus (SLE) flares are associated with increased damage and decreased health-related quality of life. We hypothesized there is discordance between physicians' and patients' views of lupus flare. In this study, we aimed to explore patient and physician descriptions of SLE flares. We conducted a qualitative descriptive study using in-depth interviews with a purposeful sample of patients with SLE (1997 ACR or SLICC criteria) and practicing rheumatologists. Interviews were audio-recorded, transcribed, and analyzed using applied thematic analysis. Forty-two patient participants living with SLE, representing a range of lupus activity, completed interviews. The majority described flare symptoms as joint pain, fatigue, and skin issues lasting several days. Few included objective signs or laboratory measures, when available, as features of flare.We interviewed 13 rheumatologists from 10 academic and 3 community settings. The overwhelming majority defined flare as increased or worsening lupus disease activity with slightly more than half requiring objective findings. Around half of the rheumatologists included fatigue, pain or other patient-reported symptoms. Patients and physicians described flare differently. Participants with SLE perceive flares as several days of fatigue, pain, and features. Providers define flares as periods of increased clinical SLE activity. Our findings suggest the current definition of flare may be insufficient to integrate both perceptions. Further study is needed to understand the pathophysiology of patient flares and the best way to incorporate patients' perspectives into clinical assessments.