Background/Purpose: There is no information available regarding whether the patient’s perception of disease activity aligns with current definitions of DORIS 2021 remission and Lupus Low Disease Activity State (LLDAS), nor whether there is concordance between the patient’s perception and that of the physician.

Aim: To compare the SLE activity perceived by the patient using the Patient Acceptable Symptom State (PASS) question with the global assessment of activity by the physician, as well as with the definitions of LLDAS/DORIS2021.

Methods: Cross-sectional multicenter study of SLE patients from seven Spanish Rheumatology Departments. DORIS 2021 remission definition and LLDAS were applied and the rheumatologists were asked to classify the activity of the disease in 5 different categories: remission, SACQ, low, moderate or high activity. The patients were asked about their clinical SLE condition through the PASS question: “Considering all the different ways your disease is affecting you, if you were to stay in this state for the next few months, do you consider your current state satisfactory?”: PASS yes/PASS no. Statistical analysis: descriptive cross-sectional analysis. Analysis of the level of agreement between the PASS question and categorical classification (remission-low activity/ moderate-high activity) using Cohen’s kappa.

Results: A total of 503 patients were included in the study (92% female, mean age 50.4 years). Table 1 shows in detail the patient´s characteristics at baseline. Of the 503 patient, 386 (77.4%) had an acceptable symptom state according to the PASS question. Mean (±SD) patient global assessment (PtGA) in a scale of 0-100 scale was 29.62 (±24.38) and mean (±SD) physician global assessment (PGA) in a scale of 0-3 was 0.46 (±0.59).A total of 236 (47.6%) patients met DORIS 2021 remission and 289 (59%) met LLDAS. According to the categorical classification of the rheumatologist: 435 (86.8%) patients were in remission or low disease; 56 (11.2%) in moderate activity and 10 (2%) in high activity state (Table 2). Among the patients who answered “yes” to the PASS question, 245 (65.5%) were in LLDAS and 220 (57.9%) were in remission according to the DORIS 2021 criteria. Mean PtGA in these patients was 19.7 (±18) and PGA 0.29 (±0.4). On the other hand, among non-PASS group, 71 (62.8%) patients were not in the LLDAS and 99 (87.6%) did not meet the criteria for DORIS 2021 remission state. Mean PtGA in these patients was 58 (±19) and PGA 1 (±0.7) (Table 3) Overall level of agreement between PASS question and categorical classification by the rheumatologist, was 82% (IC95%: 79.9, 82.9) with a Cohen’s kappa of 0.43.

Conclusion: The majority of SLE patients reported being in an acceptable symptom state according to the PASS question, with similar results reported with the PtGA scale. SLE activity is similarly perceived by the physician perspective valued by the PGA and categorical classification. However, more than a third of patients in the PASS group were not in remission/LLDAS, and approximately 10-35% of the non-PASS group are in a state of remission/LLDAS. It seems that patient perspective is similar to the physician perspective in terms of subjective classification, but some differences are seen in terms of LLDAS and DORIS.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/does-the-perspective-of-sle-patients-match-the-expert-opinion-and-definitions-of-remission-and-low-disease-activity-state-prospective-analysis-of-500-patients-from-a-spanish-multicenter-cohort/