Using Clinical Characteristics and Patient‐Reported Outcome Measures to Categorize Systemic Lupus Erythematosus Subtypes

Abstract

Objective The type 1 and type 2 systemic lupus erythematosus (SLE) categorization system was recently proposed to validate the patients’ perspective of disease and to capture a more comprehensive spectrum of symptoms. The objective of this study was to characterize the clinical manifestations of SLE subtypes and to determine the correlation between the patient‐ and physician‐reported measures used in the model. Methods This was a cross‐sectional study of patients with SLE in a university clinic. Patients completed the Systemic Lupus Activity Questionnaire (SLAQ) and 2011 American College of Rheumatology fibromyalgia (FM) criteria. Active SLE was defined as Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) score ≥6, clinical SLEDAI score ≥4, or active lupus nephritis. We identified 4 groups: type 1 SLE (active SLE without FM), type 2 SLE (inactive SLE with FM), mixed SLE (active SLE with FM), and minimal SLE (inactive SLE without FM). Results In this cohort of 212 patients (92% female, mean age 45 years), 30% had type 1 SLE, 8% had type 2 SLE, 13% had mixed SLE, and 49% had minimal SLE. Regardless of SLE disease activity, patients with FM (21%), reported higher SLAQ scores, patient global assessment scores, and self‐reported lupus flare that resulted in discordance between patient‐ and physician‐reported measures. Conclusion Fatigue, widespread pain, sleep dysfunction, and mood disorders are common symptoms in SLE. Identifying these symptoms as type 2 SLE may be a method to improve patient communication and understanding. The level of type 2 SLE impacts patients’ perception of disease and self‐reported symptoms. The SLAQ may need to be reinterpreted based on the FM severity scale.

Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician–patient interactions

“…appraisal support) related to SLE-specific experiences, especially given the impact of these types of support on SLE patient health-related quality of life [ 29 ]. Among rheumatologists who treat SLE, there are ongoing efforts to change norms of discussing SLE symptoms by introducing a categorization scheme which might aid in validating patient experiences [ 39 , 40 ].…”

Patient-Reported Outcomes for Quality of Life in SLE: Essential in Clinical Trials and Ready for Routine Care

“…The concept of 'type 1' and 'type 2' lupus symptoms has recently been proposed as a method of categorising symptoms and acknowledging the disparity between physician and patient assessment of SLE [17,108]. This proposal essentially acknowledges that 'type 1' symptoms (often considered inflammatory) are different from 'type 2' symptoms (fatigue, widespread pain, sleep disorders, depression and anxiety, frequently considered as fibromyalgia) that are prevalent in SLE.…”

“…As they are not diseasespecific, these tools have greater potential in allowing for comparisons with other disease populations or sub-cohorts within the SLE population such as patients with concomitant fibromyalgia or newly termed features of "type 2 SLE". This is clinically useful, as patients with these symptoms are less responsive to traditional immunosuppressive agents [17]. In addition, these tools have multiple benefits for clinicians beyond measuring HRQoL.…”

The use of patient-reported outcome measures to classify type 1 and 2 systemic lupus erythematosus activity

“…High Type 1 SLE activity was defined as clinical SLEDAI ≥4 (scored without labs), SLEDAI ≥6, active nephritis, or Type 1 PGA ≥1.0. 17 High Type 2 SLE activity was defined as Type 2 PGA ≥1.0. The four potential classification groups were:• Minimal : Low Type 1 Activity, Low Type 2 Activity• Type 1 : High Type 1 Activity, Low Type 2 Activity• Type 2 : Low Type 1 Activity, High Type 2 Activity• Mixed : High Type 1 Activity, High Type 2 Activity.…”