Discordance Between Patients and Physicians on Key Determinants of Systemic Lupus Erythematosus Burden: Insights From a French Comprehensive Survey

OBJECTIVE: To assess differences in perception between patients and physicians regarding the determinants of the burden of systemic lupus erythematosus (SLE) in France. METHODS: An online survey was conducted by IPSOS, a market research company, among adult patients with SLE and physicians (internists, rheumatologists, nephrologists, and dermatologists) involved in SLE care. The questionnaires were designed by a committee of lupus experts and patient research partners to cover key areas: symptoms experienced by patients with SLE, social and economic impact of the disease, and needs and expectations for the improvement of care pathways. Most questions were formulated to assess comparatively how they were perceived by patients and physicians. RESULTS: Responses from 107 patients and 101 physicians were analyzed. Regarding experienced symptoms, a patient-physician discordance was observed on the number of reported symptoms (P < 0.001) and in terms of prioritization, especially with the impact of extreme fatigue (76% vs 51%; P < 0.001) and anxiety and depression (45% vs 13%; P < 0.001), even outside flare-up periods. Physicians rarely reported that SLE significantly impacts all areas of their patients' lives, including physical, psychological, social, professional, sexual, and emotional aspects, whereas most patients expressed a lack of medical advice on areas such as sexual and emotional health, family life, professional life, and anxiety. Most patients also declared a perceived lack of information about treatment adverse effects, available therapeutic options, and potential causes of SLE. CONCLUSION: This survey highlights the significant patient-physician discordances about the burden of SLE in France and supports the need for specific interventions to improve patient information and holistic care.