Patient-physician discordance in assessing systemic lupus erythematosus disease activity: longitudinal analysis of disease related variables and quality of life

Objectives To assess the prevalence and factors associated with discordance between patient and physician global assessments (PaGA and PGA) of systemic lupus erythematosus (SLE) disease activity over time, and explore residual patient-perceived burden during remission. Methods Longitudinal data from 193 patients in the Amsterdam SLE cohort, with at least five years of follow-up were analysed. PaGA and PGA were assessed on 0–10 Likert scales. Discordance was defined as an absolute PaGA–PGA difference ≥2, and categorized as positive (PaGA > PGA), negative (PaGA < PGA), or concordant. Linear and logistic mixed-effects models were used to examine associations of PaGA, PGA, and discordance with demographic, clinical, and treatment variables. A subgroup analysis explored PaGA scores during DORIS-defined remission. Results Discordance occurred in 55.3% of cases, most of which was “positive” discordance (48.6%). Thus, PaGA scores were generally higher than PGA (median 3 vs 1; p< 0.001). PGA was higher in visits with greater SLEDAI-2K scores and more frequent glucocorticoid or NSAID use, while PaGA was lower in visits with higher SF-36 scores, but not influenced by damage. Discordance was independently associated with older age at diagnosis, lower SF-36 scores, and glucocorticoid and NSAID use. In 38% of visits where patients had DORIS remission, PaGA was ≥3. Conclusion Discordance between PaGA and PGA was frequent, stable over time, and associated with subjective health factors and medication use, but not with damage. Current definitions of disease control do not fully reflect the patient’s experience.