{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T14:16:15Z","timestamp":1786976175389,"version":"build-2736575974"},"reference-count":31,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2026,2,18]],"date-time":"2026-02-18T00:00:00Z","timestamp":1771372800000},"content-version":"vor","delay-in-days":17,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T00:00:00Z","timestamp":1769904000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["ACR Open Rheumatology"],"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To assess differences in perception between patients and physicians regarding the determinants of the burden of systemic lupus erythematosus (SLE) in France.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Responses from 107 patients and 101 physicians were analyzed. Regarding experienced symptoms, a patient\u2010physician discordance was observed on the number of reported symptoms (\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001) and in terms of prioritization, especially with the impact of extreme fatigue (76% vs 51%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001) and anxiety and depression (45% vs 13%;\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001), even outside flare\u2010up periods. Physicians rarely reported that SLE significantly impacts all areas of their patients\u2019 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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This survey highlights the significant patient\u2013physician discordances about the burden of SLE in France and supports the need for specific interventions to improve patient information and holistic care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/acr2.70144","type":"journal-article","created":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T01:09:29Z","timestamp":1771463369000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Discordance Between Patients and Physicians on Key Determinants of Systemic Lupus Erythematosus Burden: Insights From a French Comprehensive Survey"],"prefix":"10.1002","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0582-694X","authenticated-orcid":false,"given":"Laurent","family":"Chiche","sequence":"first","affiliation":[{"name":"Service de m\u00e9decine interne, H\u00f4pital Europ\u00e9en  Marseille France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Herv\u00e9","family":"Devilliers","sequence":"additional","affiliation":[{"name":"Service de m\u00e9decine interne et maladies syst\u00e9miques, Centre Hospitalier Universitaire Dijon\u2010Bourgogne  Dijon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Romane","family":"Vall\u00e9e","sequence":"additional","affiliation":[{"name":"AstraZeneca France  Courbevoie France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Camille","family":"Taccola","sequence":"additional","affiliation":[{"name":"AstraZeneca France  Courbevoie France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Molka","family":"Ghezaiel\u2010Etienne","sequence":"additional","affiliation":[{"name":"AstraZeneca France  Courbevoie France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Tripoli","sequence":"additional","affiliation":[{"name":"Association Lupus Guadeloupe  Guadeloupe France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne","family":"Rivi\u00e8re","sequence":"additional","affiliation":[{"name":"Association Fran\u00e7aise du Lupus et Autres Maladies Auto\u2010Immunes  Metz France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9453-5895","authenticated-orcid":false,"given":"Marc","family":"Scherlinger","sequence":"additional","affiliation":[{"name":"Service de rhumatologie, Centre de r\u00e9f\u00e9rence des maladies auto\u2010immunes syst\u00e9miques rares RESO, H\u00f4pitaux Universitaires de Strasbourg  Strasbourg France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,2,18]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/lupus-2020-000469"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/lupus-2025-001519"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/0961203315610644"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41573-025-01242-0"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2023-eular.1315"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23794"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kead407"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/09612033221115966"},{"key":"e_1_2_7_10_1","volume-title":"Protocole National de Diagnostic et de Soins: Lupus Syst\u00e9mique de l'adulte et de l'enfant","author":"Amour Z","year":"2024"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/0961203317722412"},{"issue":"3","key":"e_1_2_7_12_1","first-page":"517","article-title":"A charter to improve care for systemic lupus erythematosus","volume":"43","author":"Mosca M","year":"2025","journal-title":"Clin Exp Rheumatol."},{"key":"e_1_2_7_13_1","unstructured":"World Medical Association.WMA Declaration of Helsinki \u2010 Ethical Principles For Medical Research Involving Human Subjects.2013. 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