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. 2024 May 1;51(5):488-494.
doi: 10.3899/jrheum.2023-0721.

Patient and Physician Perspectives of Systemic Lupus Erythematosus Flare: A Qualitative Study

Jennifer L Rogers  1 , Megan E B Clowse  1 , Kevin McKenna  2 , Summer Starling  2 , Teresa Swezey  2 , Nneka Molokwu  2 , Amy Corneli  2 , David S Pisetsky  3 , Kai Sun  1 , Lisa G Criscione-Schreiber  1 , Rebecca E Sadun  1 , Mithu Maheswaranathan  1 , Dana Burshell  1 , Jayanth Doss  1 , Amanda M Eudy  4
Affiliations

Patient and Physician Perspectives of Systemic Lupus Erythematosus Flare: A Qualitative Study

Jennifer L Rogers et al. J Rheumatol. .

Abstract

Objective: Systemic lupus erythematosus (SLE) flares are associated with increased damage and decreased health-related quality of life. We hypothesized that there is discordance between physicians' and patients' views of SLE flare. In this study, we aimed to explore patient and physician descriptions of SLE flares.

Methods: We conducted a qualitative descriptive study using in-depth interviews with a purposeful sample of patients with SLE (who met 1997 American College of Rheumatology or Systemic Lupus International Collaborating Clinics criteria) and practicing rheumatologists. Interviews were audio-recorded, transcribed, and analyzed using applied thematic analysis.

Results: Forty-two patient participants with SLE, representing a range of SLE 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 majority defined flare as increased or worsening SLE disease activity, with slightly more than half requiring objective findings. Around half of the rheumatologists included fatigue, pain, or other patient-reported symptoms.

Conclusion: Patients and physicians described flare differently. Participants with SLE perceived flares as several days of fatigue, pain, and skin issues. Providers defined 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.

Keywords: disease activity; fatigue; fibromyalgia; lupus nephritis; self-assessment; systemic lupus erythematosus.

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Conflict of interest statement

MEBC has received grant support from Pfizer, Exagen, Astra-Zeneca, GlaxoSmithKline, and Immunovant and consulting fees from GlaxoSmithKline, UCB, and Amgen. JLR has received grant support from Pfizer, Exagen, Astra-Zeneca and Immunovant and consulting fees from Eli Lilly, Immunovant, Amgen, GlaxoSmithKline, Aurinia, Janssen, and Ampel Biosolutions. DSP has received consulting fees from Immunovant and GlaxoSmithKline. AME has received grant support from Pfizer, Exagen, GlaxoSmithKline, and Immunovant and consulting fees from Amgen. All other authors have no conflicts of interest to disclose.

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