1113 Patient and Physician Perspectives of Lupus Flare

Rogers, Jennifer L.; Clowse, Megan E.B.; McKenna, Kevin; Starling, Summer; Swezey, Teresa; Molokwu, Nneka; Corneli, Amy; Pisetsky, David S.; Sun, Kai; Criscione-Schreiber, Lisa G; Sadun, Rebecca E.; Maheswaranthan, Mithunan; Doss, Jayanth; Eudy, Amanda M

doi:10.1136/lupus-2021-lupus21century.56

Cited by 2 publications

(6 citation statements)

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“…Type 2 SLE symptoms were perceived as “every day lupus,” but most patients also described escalating Type 2 SLE symptoms in their definition of a flare. 10 Patients could have severe fatigue or brain fog, but used the term “severe” to describe the potential implications of Type 1 SLE symptoms, such as organ damage or failure. As participants indicated, both Type 1 and Type 2 symptoms impact patients’ lives and are part of the lupus disease experience.…”

Section: Discussionmentioning

confidence: 99%

“…9 At present, many rheumatologists consider manifestations such as rash, arthritis, and proteinuria as evidence of disease activity or flare, but view fatigue, brain fog, and pain as distinct from traditional SLE activity. 10 However, prior research has shown that fatigue and pain can improve as SLE disease activity improves, suggesting some fatigue and pain may be driven by inflammation. [11][12][13][14] Additionally, some patients with SLE describe disease flares as frequently characterized by symptoms of extreme fatigue, aching joints, muscle weakness or pain, and forgetfulness, 15 and patients continue to struggle with the management of these symptoms.…”

Section: Introductionmentioning

confidence: 99%

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

Eudy,

Clowse,

Corneli

et al. 2024

Lupus

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Eudy,

Clowse,

Corneli

et al. 2024

Lupus

View full text Add to dashboard Cite

show abstract

“…In this issue of The Journal of Rheumatology, Rogers et al bring a further dimension to this debate, with respect to the differences between clinicians' and patients' understanding of the concept of flare. 1 So first, what do clinicians mean by flare? In an attempt to standardize this, especially for research purposes, a consensus definition of flare was developed under the auspices of the Lupus Foundation of America as "a measurable increase in disease activity involving new or worse clinical signs and symptoms and/ or laboratory measurements.…”

mentioning

confidence: 99%

“…In their study in this issue of The Journal of Rheumatology, Rogers et al undertook a qualitative study of patients and clinicians to shed light on this topic. 1 These authors previously developed the model of Type 1 and Type 2 manifestations of SLE, wherein Type 1 manifestations reflect measurable immunological and/or inflammatory disease evident in one or more organ systems, and Type 2 manifestations include pain, fatigue, depression, and "brain fog, " which have a relationship to inflammation that is less clear. They selectively recruited 42 patients with SLE in 4 subgroups, with Type 1 manifestations, Type 2 manifestations, both, or neither.…”

mentioning

confidence: 99%

“…Patients with the highest rate of self-reported flares (> 7 in 1 year) sought urgent or emergency care more frequently but were not hospitalized more often. 10,11 As Rogers et al noted, 1 differences such as these create the potential for a divide to arise between patients and their treating clinicians, eroding trust and medication adherence, harming clinical outcomes. How can this be reconciled?…”

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confidence: 99%

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