Background/Purpose: The management of SLE relies on regular assessment of disease activity. However, patient perception of disease activity can be highly variable and may be discordant with physician assessment. This problem has recently become a more important consideration due to the rise in virtual or telephone consultations, in which physicians may be guided by patient reported symptoms and perceived disease activity. In this study, we sought to evaluate factors associated with discordance between physician and patient perception of disease activity in SLE in a global cohort of patients.

Methods: Data was collected from an international collaborative research survey of more than 17,000 participants (of which 1292 had SLE). Variables such as disease duration, symptoms, comorbidities, medication and validated Patient Reported Outcome Measures (PROMs) were included. Patient perception of disease activity was self-reported. Physician defined disease activity was classified as the presence of at least one symptom of active SLE (including joint swelling, active rash, oral ulcers, alopecia, active renal disease) in addition to the need for a change or increase in lupus treatment within the last 6 months. Patients were classified into three groups; 1. Concordant active (both physician and patient in agreement of active disease); 2. Discordant (patient reported disease to be active but did not fulfil definition of physician confirmed active disease); 3. Concordant inactive (both physician and patient in agreement that the disease is 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. Predictors of discordance were analysed in regression models. Statistical significance was defined as p< 0.05.

Results: Of the 1292 patients with SLE, 5.1% were defined as Concordant Active disease, 49.46% had Concordant Inactive disease, and 45.43% were Discordant (patient perceived active with physician defined inactive disease). Cramer’s phi between Physician Active and Patient Active disease was 0.16 (weak association). As summarised in Table 1, there was no difference in age, gender or disease duration between groups. In patients with inactive disease, Caucasian patients were more likely to be discordant (p < 0.0001), with Asian, Mixed and Other ethnicities more likely to be concordant. In terms of treatment, those on steroids and immunosuppressive agents were more likely to be discordant in their assessment of disease activity, whilst those on no treatment were more likely to be in agreement with physicians that their disease was inactive. As shown in Figure 1, key symptomatic drivers of discordance included fatigue, pain and Global Mental Health scores (p < 0.0001). Patients were more likely to agree that their disease was inactive in the context of lower levels of pain, fatigue and better mental health scores whilst being on less treatment.

Conclusion: This study highlights that nearly half of patients perceive their disease to be active when their physicians feels it is inactive. In particular this was observed in those who reporting from high levels of fatigue, pain and poorer mental health.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/factors-associated-with-discordance-between-patient-and-physician-perception-of-disease-activity-among-patients-with-systemic-lupus-erythematosus-an-international-collaborative-study/