Italian Systemic Lupus Erythematosus (SLE) Patients: Overview of Their Quality of Life and Unmet Needs

Background/Objectives: Systemic Lupus Erythematosus (SLE) is a multifactorial disease that significantly affects patients' quality of life (QoL) and poses management challenges. This project combined a nationwide patient listening initiative with an Advisory Board (AB) to identify unmet needs and perceptions, aiming to integrate patient perspectives into decision-making and enhance SLE care. Methods: The "PaLESiamoci!" project, conducted by IQVIA with two patient organizations (Gruppo LES Italiano and APMARR), included both qualitative and quantitative phases. Ten patients completed disease diaries and one-hour interviews, while 151 others voluntarily filled a PO-administered survey including the validated 12-item Medical Outcome Short Form (SF-12) and items on physical, emotional, and daily life impact. Insights from these phases informed the AB discussion involving clinicians and patient representatives on six key topics. Results: Patients with SLE showed lower Physical (-13.4) and Mental (-14.0) Component Summary scores than the Italian population, indicating reduced social and work functioning. Despite EULAR recommendations to minimize corticosteroid use, 64% of patients remained on corticosteroids. The AB discussions revealed key unmet needs, including differing awareness of organ damage risks, corticosteroid-related adverse events, and adherence challenges, as well as the need for non-pharmacological and multidisciplinary support. Conclusions: The project highlighted major gaps and opportunities in SLE management. Patient organizations and rheumatologists emphasized developing tailored educational materials, strengthening rheumatologist-patient communication, and promoting multidisciplinary, patient-centered approaches to improve overall care.