{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,8]],"date-time":"2026-05-08T00:20:43Z","timestamp":1778199643283,"version":"3.51.4"},"reference-count":34,"publisher":"BMJ","issue":"1","license":[{"start":{"date-parts":[[2022,5,12]],"date-time":"2022-05-12T00:00:00Z","timestamp":1652313600000},"content-version":"unspecified","delay-in-days":11,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Lupus Sci Med"],"accepted":{"date-parts":[[2022,4,28]]},"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>Among the most significant challenges in SLE are the excessive diagnosis delay and the lack of coordinated care. The aim of the study was to investigate patient pathways in SLE in order to improve clinical and organisational challenges in the management of those with suspected and confirmed SLE.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We conducted a cross-sectional study of patients with SLE, healthcare providers and other representative stakeholders. Focus groups were conducted, and based on the collected data the most impactful disruption points in SLE patient pathways were identified. A novel framework to improve individual patient pathways in SLE was developed, discussed and validated during a consensus meeting with representative stakeholders.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Six thematic clusters regarding disruption in optimal patient pathways in SLE were identified: appropriate and timely referral strategy for SLE diagnosis; the need for a dedicated consultation during which the diagnosis of SLE would be announced, and following which clarifications and psychological support offered; individualised patient pathways with coordinated care based on organ involvement, disease severity and patient preference; improved therapeutic patient education; prevention of complications such as infections, osteoporosis and cancer; and additional patient support. During the consensus meeting, the broader panel of stakeholders achieved consensus on these attributes and a framework for optimising SLE patient pathways was developed.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>We have identified significant disruption points and developed a novel conceptual framework to improve individual patient pathways in SLE. These data may be of valuable interest to patients with SLE, their physicians, health organisations as well as policy makers.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/lupus-2022-000700","type":"journal-article","created":{"date-parts":[[2022,5,23]],"date-time":"2022-05-23T13:23:19Z","timestamp":1653312199000},"page":"e000700","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":25,"title":["Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study"],"prefix":"10.1136","volume":"9","author":[{"given":"Aurelien","family":"Schlencker","sequence":"first","affiliation":[{"name":"Service de Rhumatologie, H\u00f4pitaux universitaires de Strasbourg, Strasbourg, France"},{"name":"Centre National de R\u00e9f\u00e9rences des Maladies Auto-immunes Rares (CRMR RESO), Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laurent","family":"Messer","sequence":"additional","affiliation":[{"name":"Service de Rhumatologie, H\u00f4pitaux Civils de Colmar, Colmar, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marc","family":"Ardizzone","sequence":"additional","affiliation":[{"name":"Service de Rhumatologie, GHR Mulhouse Sud-Alsace, Mulhouse, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gilles","family":"Blaison","sequence":"additional","affiliation":[{"name":"Service de m\u00e9decine interne, Centre de comp\u00e9tence Maladies auto-immunes rares, H\u00f4pitaux Civils de Colmar, Colmar, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Olivier","family":"Hinschberger","sequence":"additional","affiliation":[{"name":"Service de m\u00e9decine interne, Centre de comp\u00e9tence Maladies auto-immunes rares, H\u00f4pitaux Civils de Colmar, Colmar, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Etienne","family":"Dahan","sequence":"additional","affiliation":[{"name":"Service de Rhumatologie, H\u00f4pitaux universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christelle","family":"Sordet","sequence":"additional","affiliation":[{"name":"Service de Rhumatologie, H\u00f4pitaux universitaires de Strasbourg, Strasbourg, France"},{"name":"Centre National de R\u00e9f\u00e9rences des Maladies Auto-immunes Rares (CRMR RESO), Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Walther","sequence":"additional","affiliation":[{"name":"Service de pharmacie st\u00e9rilisation, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne","family":"Dory","sequence":"additional","affiliation":[{"name":"Service de pharmacie st\u00e9rilisation, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Gonzalez","sequence":"additional","affiliation":[{"name":"Service de Pathologie Professionnelle et de M\u00e9decine du Travail, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"St\u00e9phanie","family":"Kleinlogel","sequence":"additional","affiliation":[{"name":"Service de Pathologie Professionnelle et de M\u00e9decine du Travail, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aur\u00e9lia","family":"Bramont-Nachman","sequence":"additional","affiliation":[{"name":"Service de Pathologie Professionnelle et de M\u00e9decine du Travail, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lionel","family":"Barrand","sequence":"additional","affiliation":[{"name":"Laboratoire Barrand, Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabelle","family":"Payen-Revol","sequence":"additional","affiliation":[{"name":"M\u00e9diation Conseil Sant\u00e9, Paris, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean","family":"Sibilia","sequence":"additional","affiliation":[{"name":"Service de Rhumatologie, H\u00f4pitaux universitaires de Strasbourg, Strasbourg, France"},{"name":"Centre National de R\u00e9f\u00e9rences des Maladies Auto-immunes Rares (CRMR RESO), Strasbourg, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thierry","family":"Martin","sequence":"additional","affiliation":[{"name":"Centre National de R\u00e9f\u00e9rences des Maladies Auto-immunes Rares (CRMR RESO), Strasbourg, France"},{"name":"Service 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