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. 2024 Mar;33(3):266-272.
doi: 10.1177/09612033241228343. Epub 2024 Jan 18.

The Type 1 & 2 systemic lupus erythematosus model: Perspectives of people living with systemic lupus erythematosus

Amanda M Eudy  1 , Megan Eb Clowse  1 , Amy Corneli  1   2 , Kevin McKenna  2 , David S Pisetsky  1   3 , Mithu Maheswaranathan  1 , Dana Burshell  1 , Jayanth Doss  1 , Kai Sun  1 , Rebecca E Sadun  1 , Lisa G Criscione-Schreiber  1 , Jennifer L Rogers  1
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The Type 1 & 2 systemic lupus erythematosus model: Perspectives of people living with systemic lupus erythematosus

Amanda M Eudy et al. Lupus. 2024 Mar.

Abstract

Objective: In the new Type 1 & 2 model for systemic lupus erythematosus (SLE), Type 1 SLE represents classic inflammatory manifestations, such as arthritis, while Type 2 SLE encompasses symptoms such as pain and fatigue where the relationship to inflammation is less clear. The objective of this study was to interview individuals living with SLE to determine the content and face validity of the Type 1 & 2 SLE model.

Methods: We conducted a qualitative study using semi-structured interviews with a purposeful sample of participants who met classification criteria for SLE. Participants were asked to describe their experiences with Type 1 & 2 SLE symptoms and treatments, and they indicated if and how their personal experiences aligned with the Type 1 & 2 SLE model. All interviews were audio-recorded and transcribed; applied thematic analysis identified the most frequent and salient themes.

Results: We interviewed 42 participants with SLE. Type 2 SLE symptoms, such as pain and fatigue, were very common, with almost all participants experiencing some Type 2 symptoms at some point during their disease course. Participants described Type 1 SLE symptoms as being acute flares and life-threatening and Type 2 SLE symptoms as "everyday lupus" that affected their daily lives and were a dominant part of their SLE disease experience. Most participants stated they want their rheumatologists to discuss Type 2 symptoms during clinical appointments in order to address their full symptom experience.

Conclusion: We demonstrated content and face validity of the Type 1 & 2 SLE model with people living with SLE. Participants in our study largely understood the model and felt it accurately reflected their experience living with SLE. Type 2 SLE symptoms are very common in individuals with SLE and impact patients' quality of life. Using the model to address Type 2 SLE symptoms allows the rheumatologist to incorporate the patient's perspective and provide patient-centered care.

Keywords: Systemic lupus erythematosus; Type 1 & 2 systemic lupus erythematosus model; qualitative research.

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Conflict of interest statement

Declaration of conflicting interestsAME has received grant support from Pfizer, Exagen, Immunovant, and GlaxoSmithKline and consulting fees from Amgen. MEBC has received grant support from Pfizer, Exagen, Immunovant, GlaxoSmithKline, and Astra-Zeneca and consulting fees from GlaxoSmithKline, Amgen, and UCB. DSP has received grant support from Immunovant and Exagen; consulting fees from Immunovant and GlaxoSmithKline; and served on a Data Safety Monitor Board for Bristol Myers Squibb. MM has received consulting fees from AstraZeneca. JLR has received grant support from Pfizer, Exagen, Immunovant, Astra-Zeneca and consulting fees from GlaxoSmithKline, Amgen, Aurinia, Immunovant, Janssen, Eli Lily, and Ampel Biosolutions. All other authors have no conflicts of interest to disclose.

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