Background/Purpose: To better characterize the signs and symptoms of systemic lupus erythematosus (SLE) we have developed a conceptual model to characterize SLE activity into two dimensions: 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. The objective of this study was to assess how the Type 1 and 2 conceptual model fits within the disease experience of individuals living with SLE.

Methods: We conducted semi-structured interviews among purposefully selected adult participants meeting SLICC criteria for SLE. High Type 1 symptoms were defined as SLEDAI ≥6, and high Type 2 symptoms were defined as a fibromyalgia severity score ≥12. Participants with a history of high Type 1 and 2 SLE in the prior year were classified as Mixed SLE. All interviews were audio-recorded and transcribed, with subsequent qualitative thematic analysis. 

Results: Thirty-seven patients were interviewed (12 with Type 1 SLE, 12 with Type 2 SLE, and 13 with  Mixed SLE); 73% were aged ≤55 years, 84% had disease duration ≥5 years, 49% were black or African American, and 35% had a history of nephritis. 

Self-Classification: Most patients endorsed some degree of Type 2 symptoms and self-identified as Mixed SLE (n=24), n=8 as Type 2 SLE, and n=5 as Type 1 SLE.  

Most Bothersome Symptoms: In every patient sub-group, participants were split on whether Type 1 symptoms (n=16), Type 2 symptoms (n=14), or the combination of both (n=7) were most bothersome.  Fatigue, followed by joint pain and rash, were the most bothersome symptoms.  The prevalence and severity of these symptoms, as well as their impact on physical and social functioning (fatigue and joint pain) and appearance or self-esteem (rash) made these symptoms most problematic. 

Treatment: The type of symptoms the patient wanted to be the focus of therapy was different based on the patient’s experience with Type 1 and 2 symptoms: 8/12 Type 1 participants identified Type 1 symptoms, 7/12 Type 2 participants identified Type 2 symptoms, and 7/13 Mixed participants identified both Type 1 & 2 symptoms. 

Ignoring Type 2 Symptoms: Participants in all three groups (n=22/31) wanted their rheumatologist to discuss Type 2 symptoms during clinic appointments in order to address their full symptom experience (n=18). Several participants (n=5) stated they would find a new rheumatologist if their Type 2 symptoms were not addressed.  Conversely, some participants (n=9) said they accept rheumatologists’ emphasis on Type 1 symptoms, primarily because the patient themselves would still bring up their Type 2 symptoms. Three participants felt Type 1 symptoms were more severe and should be addressed first.

Conclusion: The Type 1 and 2 conceptual model appeared to be reflective of most participants’ experience, with Type 2 symptoms most frequently reported and both Type 1 and 2 symptoms being bothersome and warranting treatment.  Despite their disease classification, almost all participants reported some degree of Type 2 symptoms and most felt discussing and treating these symptoms should be an important component of their lupus care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-perspective-of-the-type-1-and-2-sle-model-a-qualitative-study/