Background/Purpose: The Type 1 & 2 SLE Model was developed to better characterize the signs and symptoms of SLE. Type 1 SLE consists of inflammatory manifestations like arthritis, nephritis, and rashes; Type 2 SLE includes symptoms of fatigue, myalgia, mood disturbance, and cognitive dysfunction. In this study, we explored patient experiences living with Type 2 SLE symptoms.

Methods: Semi-structured in-depth interviews were conducted among adult participants meeting ACR or SLICC criteria for SLE. Participants were purposefully selected for age, race, sex, and nephritis history. All interviews were audio-recorded and transcribed. Data were analyzed through episode profile analysis. Two rheumatologists and a lupus researcher independently read transcripts, summarized patterns of Type 1 & 2 SLE symptoms described by participants, and identified broader themes about the relationship between Type 1 & 2 SLE symptoms. Through this process, two patterns of Type 2 SLE symptoms were identified. The two patterns were then descriptively compared.

Results: We interviewed 42 patients with SLE (93% female, 52% Black, mean age 45 years, mean disease duration 15 years). All but two participants reported experiencing Type 2 SLE symptoms at some point during their disease course.

Type 2 SLE Pattern: Two patterns of Type 2 SLE were identified: intermittent or resolving (n=18) and persistent or pervasive (n=24). Patients with intermittent Type 2 often experience Type 2 symptoms in tandem with or as a result of Type 1 symptoms. In these patients, Type 2 symptoms improve and are often not present when Type 1 disease is inactive, leaving these patients feeling generally well. In contrast, patients with persistent Type 2 experience Type 2 symptoms regardless of Type 1 symptoms. For these patients, Type 2 symptoms are always present, although the severity may fluctuate.

Demographics: Compared to patients with persistent Type 2, patients with intermittent Type 2 were typically younger (39 vs. 50 years old) and more often Black (67% vs. 42%).

Self-Reported Symptoms during Disease Course: A majority of participants in both groups reported they had experienced brain fog and depression, and all but two participants reported experiencing fatigue. Almost all had experienced traditional lupus symptoms of joint pain, hair loss, and rash. Participants in the persistent Type 2 group were more likely to describe experiencing anxiety, muscle pain, and widespread pain.

Clinical Criteria: Almost all participants met musculoskeletal and mucocutaneous SLE criteria. However, more patients with intermittent Type 2 met renal, hematologic, and immunologic criteria.

Conclusion: Almost all patients in our study experienced Type 2 symptoms, and we found two unique patterns of Type 2 SLE: intermittent and persistent. Patients with intermittent Type 2 SLE have more internal SLE manifestations and feel generally well when Type 1 is inactive. Patients with persistent Type 2 always experience Type 2 symptoms despite inactive Type 1. We hypothesize some degree of Type 2 symptoms in each group might be inflammation-driven; however, the persistence of Type 2 in one group suggests different underlying pathophysiology.

« Back to ACR Convergence 2021

ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-perspectives-on-two-distinct-patterns-of-type-2-sle-symptoms/