{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T01:46:05Z","timestamp":1784684765949,"version":"3.55.0"},"reference-count":19,"publisher":"MDPI AG","issue":"23","license":[{"start":{"date-parts":[[2025,11,30]],"date-time":"2025-11-30T00:00:00Z","timestamp":1764460800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"GSK"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Background\/Objectives: Systemic Lupus Erythematosus (SLE) is a multifactorial disease that significantly affects patients\u2019 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 \u201cPaLESiamoci!\u201d 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 (\u221213.4) and Mental (\u221214.0) 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\u2013patient communication, and promoting multidisciplinary, patient-centered approaches to improve overall care.<\/jats:p>","DOI":"10.3390\/jcm14238498","type":"journal-article","created":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T16:20:29Z","timestamp":1765210829000},"page":"8498","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Italian Systemic Lupus Erythematosus (SLE) Patients: Overview of Their Quality of Life and Unmet Needs"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8988-9106","authenticated-orcid":false,"given":"Luca","family":"Moroni","sequence":"first","affiliation":[{"name":"Unit of Immunology, Rheumatology, Allergy and Rare Disease (UniRAR), IRCCS San Raffaele Hospital, 20132 Milan, Italy"},{"name":"Faculty of Medicine, Vita-Salute San Raffaele University, 20132 Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3087-8477","authenticated-orcid":false,"given":"Ginevra","family":"De Marchi","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Azienda Sanitaria Universitaria Friuli Centrale (ASUFC), 33100 Udine, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosa","family":"Pelissero","sequence":"additional","affiliation":[{"name":"Gruppo LES Italiano ODV, 10040 Leini, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mercedes","family":"Callori","sequence":"additional","affiliation":[{"name":"Gruppo LES Italiano ODV, 10040 Leini, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Italia","family":"Agresta","sequence":"additional","affiliation":[{"name":"APMARR Associazione Nazionale Persone con Malattie Reumatologiche e Rare APS ETS, 73100 Lecce, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonella","family":"Celano","sequence":"additional","affiliation":[{"name":"APMARR Associazione Nazionale Persone con Malattie Reumatologiche e Rare APS ETS, 73100 Lecce, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-5263-3970","authenticated-orcid":false,"given":"Elisa","family":"Cosentino","sequence":"additional","affiliation":[{"name":"Medical Affairs, GlaxoSmithKline S.p.A., 37135 Verona, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3544-9989","authenticated-orcid":false,"given":"Silvia","family":"Tamanini","sequence":"additional","affiliation":[{"name":"Medical Affairs, GlaxoSmithKline S.p.A., 37135 Verona, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessia","family":"Delli Carri","sequence":"additional","affiliation":[{"name":"Medical Affairs, GlaxoSmithKline S.p.A., 37135 Verona, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2889-366X","authenticated-orcid":false,"given":"Giuseppe Alvise","family":"Ramirez","sequence":"additional","affiliation":[{"name":"Unit of Immunology, Rheumatology, Allergy and Rare Disease (UniRAR), IRCCS San Raffaele Hospital, 20132 Milan, Italy"},{"name":"Faculty of Medicine, Vita-Salute San Raffaele University, 20132 Milan, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessia","family":"Nano","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Azienda Sanitaria Universitaria Friuli Centrale (ASUFC), 33100 Udine, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0134-6439","authenticated-orcid":false,"given":"Luca","family":"Quartuccio","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Azienda Sanitaria Universitaria Friuli Centrale (ASUFC), 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