Background/Purpose: Understanding the discordance between patient- and physician-reported disease assessment scores is essential for incorporating patient-reported outcomes into disease activity measures and identifying gaps between physician and patient perception of disease activity. Our objective is to identify factors associated with discordance between Patient Global Assessment (PtGA) and Physician Global Assessment (PGA) scores in a large multicenter SLE cohort.

Methods: The Lupus Clinical Trials Consortium (LCTC) is a prospective cohort of SLE patients from U.S. and Canadian centers. Data were collected during biannual routine visits. Discordance was defined as PtGA minus PGA, with positive discordance indicating higher scoring of disease activity by the patient as compared to their physician. Multivariable linear mixed effects regression evaluated associations between discordance and patient characteristics. Multivariable mixed effects logistic regression was performed to calculate odds ratios (ORs) and 95% confidence intervals (CIs) for the association between positive discordance and patient characteristics. All statistical analyses were performed in RStudio, with a significance level set at 0.05.

Results: The study included 1,349 SLE patients. Patients who met 4 of 11 ACR criteria for SLE and had baseline PtGA and PGA scores available were included. Mean age at diagnosis was 29.3 (±12.4) years, with an average disease duration of 12 years. The cohort was 48% White and 37% Black. Mean PGA and PtGA scores were 0.72 and 0.92, respectively (range 0 to 3); 60% of patients rated their disease as more severe than their physician. Black patients had 0.09 lower discordance than White patients (95% CI [-0.17, 0.00], p=0.043). College-educated patients had 0.11 lower discordance than those without a degree (95% CI [-0.19, -0.04], p=0.002). Current smokers showed 0.16 higher discordance than never-smokers (95% CI [0.04, 0.28], p=0.01). Patients needing help with daily activities had nearly double the odds of positive discordance (OR=1.96, 95% CI [1.36, 2.83], p< 0.001). Government insurance was associated with increased odds of positive discordance (OR=1.55, 95% CI [1.01, 2.38], p=0.044). Each point increase in SELENA SLEDAI score was linked to a 15% decrease in odds of positive discordance (OR=0.85, 95% CI [0.82, 0.89], p< 0.001). Patients with arthritis, renal disease, or neurologic disorder had 41% (OR=0.59, 95% CI [0.38, 0.91], p=0.018), 35% (OR=0.65, 95% CI [0.47, 0.90], p=0.01), and 38% (OR=0.62, 95% CI [0.40, 0.97], p=0.037) lower odds, respectively, of rating disease activity higher than physicians. No association was found between discordance and medication adherence, hospitalizations, or disability.

Conclusion: In this large SLE cohort, most patients rated their disease as more severe than their physicians. Functional limitations and governmental insurance were key predictors of higher patient-rated disease activity. In contrast, disease activity measured by SLEDAI and certain organ manifestations were linked to lower odds of positive discordance.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/discordance-between-physician-and-patient-global-assessment-of-disease-activity-in-a-large-multicenter-prospective-sle-cohort-in-the-u-s-and-canada/