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Abstract
Objective The management of systemic lupus erythematosus (SLE) relies on accurately evaluating disease activity. However discordance between physician and patient perceptions of disease activity are frequently observed. With the increasing prevalence of virtual consultations, understanding factors contributing to this discordance in patient perceived disease activity is crucial. This global study aimed to identify predictors of patient-physician discordance in a large global SLE population.
Methods Data was collected from the COVAD study, a collaborative international survey with 17,000 participants (1292 with SLE). Variables included disease duration, symptoms, comorbidities, medication, and Patient Reported Outcome Measures (PROMs) were recorded. Patient perception of disease activity was self-reported, while physician-defined activity required a new symptom of active SLE and a change in immunosuppressive medication within the preceding 6 months. Participants were categorized as Concordant Active, Discordant, or Concordant Inactive. Differences between groups was evaluated using Chi Square and t-test. Cramer’s phi was used to assess strength on concordance between patient and physician reported disease activity.
Results Among the 1292 SLE patients included in the study, 5.1% were Concordant Active (i.e. both patient and physician were in agreement that the disease was active), 49.46% were Concordant Inactive (both in agreement that the disease was not active), and 45.43% were Discordant (where the patient felt their SLE was active but they did not meet physician criteria for active disease). Weak association (Cramer’s phi = 0.16) was observed between Physician Active and Patient Active disease. The key differences noted in those with discordance in perceived disease activity are summarised in figure 1. Discordance was higher in Caucasian patients with inactive disease (p<0.0001), while other ethnicities were more likely to be concordant. Steroid and immunosuppressive use correlated with discordance, whereas patients on no treatment were more likely concordant with physician assessment. Symptomatic drivers of discordance included fatigue, pain, and Global Mental Health scores (p<0.0001).
Conclusion Nearly half of SLE patients perceive active disease when physicians deem it inactive, particularly in those experiencing high fatigue, pain, and poorer mental health. These findings emphasise the importance of recognising patient-reported symptoms, especially in virtual consultations, to enhance comprehensive disease management in SLE.
Patients who reported active disease (in the context of physician defined inactive disease, i.e. discordant) reported high levels of Pain (A), Fatigue (B) and had poorer mental health (C) and physical function (D) than those with concordant inactive disease (in which both patient and physician agreed the disease was not active). There was no significant difference in PROMIS Physical Health Score (E), Age (F) or Disease Duration (G). ns, not significant; **** p<0.0001
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