{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T02:39:59Z","timestamp":1788316799644,"version":"build-2803163510"},"reference-count":27,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2025,9,24]],"date-time":"2025-09-24T00:00:00Z","timestamp":1758672000000},"content-version":"unspecified","delay-in-days":85,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004690","name":"Minist\u00e8re de la Sant\u00e9","doi-asserted-by":"publisher","award":["D\u00e9mocatrie sanitaire"],"award-info":[{"award-number":["D\u00e9mocatrie sanitaire"]}],"id":[{"id":"10.13039\/501100004690","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["RMD Open"],"accepted":{"date-parts":[[2025,9,8]]},"published-print":{"date-parts":[[2025,7]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To develop and validate LUPIN, a self-administered, patient-centred questionnaire codesigned by patients and lupus specialists to assess disease activity and patient-reported outcomes in systemic lupus erythematosus (SLE).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>LUPIN and the SF-36 questionnaires were distributed across 34 centres in both metropolitan France and overseas territories. Patients completed the questionnaire prior to their consultations. Physicians, blinded to patients\u2019 responses, assessed disease activity using SLE Disease Activity Index 2000 (SLEDAI-2K) and Physician Global Assessment (PhGA). Correlations and discordances between patient and physician assessments were analysed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Among 444 participants (85%\u2009women, mean age 45 years), the most common manifestations included joint (86%) and skin (72%) involvement; 35% had a history of lupus nephritis. While correlations between LUPIN scores and SLEDAI\/PhGA were statistically significant but modest (r&lt;0.39), stronger associations were observed with SF-36 domains for fatigue (r=0.65), pain (r=0.65), and physical function (r=0.69). In patients with active SLE (SLEDAI\u22654; n=153), the correlation between LUPIN and clinical SLEDAI improved (r=0.53, p&lt;0.0001). Discordances were primarily driven by patient-reported fatigue and pain, unrelated to suspected mechanical or central pain syndromes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>LUPIN effectively captures symptom domains that are often under-represented in conventional clinical indices and reflects the lived burden of disease in SLE. It offers a practical, scalable tool to support patient engagement, shared decision-making and individualised disease monitoring. A longitudinal digital study is underway to further assess its value in tracking disease fluctuations over time.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/rmdopen-2025-006106","type":"journal-article","created":{"date-parts":[[2025,9,24]],"date-time":"2025-09-24T05:20:18Z","timestamp":1758691218000},"page":"e006106","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Development and validation of LUPIN: a patient-centred self-administered tool to assess disease activity and patient-reported outcomes in systemic lupus erythematosus"],"prefix":"10.1136","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9453-5895","authenticated-orcid":false,"given":"Marc","family":"Scherlinger","sequence":"first","affiliation":[{"name":"Rheumatology Department, National Reference Center for Rare Systemic Autoimmune Diseases, Hopitaux Universitaires de Strasbourg, Strasbourg, France"},{"name":"Laboratoire d'ImmunoRhumatologie Mol\u00e9culaire, INSERM UMR_S 1109, Universit\u00e9 de Strasbourg, 4 rue Kirschleger, 67085, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9062-7883","authenticated-orcid":false,"given":"Jean-Francois","family":"Kleinmann","sequence":"additional","affiliation":[{"name":"Rheumatology Department, National Reference Center for Rare Systemic Autoimmune Diseases, Hopitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonin","family":"Folliasson","sequence":"additional","affiliation":[{"name":"Hometrix Health, Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne","family":"Riviere","sequence":"additional","affiliation":[{"name":"Association France lupus Et autres maladies auto-immunes (AFL+), Metz, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabine","family":"Malivoir","sequence":"additional","affiliation":[{"name":"National Reference Center for Lupus and Antiphospholipid Syndrome, Internal Medicine Department and Piti\u00e9-Salp\u00eatri\u00e8re Hospital, AP-HP, Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raphaelle","family":"Rybak","sequence":"additional","affiliation":[{"name":"Association France lupus Et autres maladies auto-immunes (AFL+), Metz, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jean","family":"Sibilia","sequence":"additional","affiliation":[{"name":"Rheumatology Department, National Reference Center for Rare Systemic Autoimmune Diseases, Hopitaux Universitaires de Strasbourg, Strasbourg, France"},{"name":"Laboratoire d'ImmunoRhumatologie Mol\u00e9culaire, INSERM UMR_S 1109, Universit\u00e9 de Strasbourg, 4 rue Kirschleger, 67085, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zahir","family":"Amoura","sequence":"additional","affiliation":[{"name":"National Reference Center for Lupus and Antiphospholipid Syndrome, Internal Medicine Department and Piti\u00e9-Salp\u00eatri\u00e8re Hospital, AP-HP, Paris, France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2025,9,23]]},"reference":[{"key":"2025121606200880000_11.3.e006106.1","doi-asserted-by":"crossref","unstructured":"Scherlinger M , Kolios AGA , Kyttaris VC , et al . Advances in the treatment of systemic lupus erythematosus. Nat Rev Drug Discov 2025;1\u201319. doi:10.1038\/s41573-025-01242-0","DOI":"10.1038\/s41573-025-01242-0"},{"key":"2025121606200880000_11.3.e006106.2","doi-asserted-by":"crossref","DOI":"10.1186\/s13075-015-0702-6","article-title":"Measuring disease activity in adults with systemic lupus erythematosus: the challenges of administrative burden and responsiveness to patient concerns in clinical research","volume":"17","author":"Mikdashi","year":"2015","journal-title":"Arthritis Res Ther"},{"key":"2025121606200880000_11.3.e006106.3","doi-asserted-by":"crossref","DOI":"10.1136\/rmdopen-2025-005661","article-title":"Determinants of social participation in patients living with systemic lupus erythematosus: the Psy-LUP multicentre study","volume":"11","author":"Manet","year":"2025","journal-title":"RMD Open"},{"key":"2025121606200880000_11.3.e006106.4","doi-asserted-by":"crossref","DOI":"10.1136\/rmdopen-2022-002395","article-title":"Fatigue is independently associated with disease activity assessed using the Physician Global Assessment but not the SLEDAI in patients with systemic lupus erythematosus","volume":"8","author":"Mertz","year":"2022","journal-title":"RMD Open"},{"key":"2025121606200880000_11.3.e006106.5","first-page":"697","article-title":"The use of patient-reported outcome measures to classify type 1 and 2 systemic lupus erythematosus activity","volume":"31","author":"Eudy","year":"2022","journal-title":"Lupus (Los Angel)"},{"key":"2025121606200880000_11.3.e006106.6","doi-asserted-by":"crossref","first-page":"735","DOI":"10.1002\/acr.23794","article-title":"A Novel System to Categorize the Symptoms of Systemic Lupus Erythematosus","volume":"71","author":"Pisetsky","year":"2019","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"2025121606200880000_11.3.e006106.7","doi-asserted-by":"crossref","DOI":"10.1186\/s41927-023-00355-6","article-title":"Patient-reported outcomes and healthcare resource utilization in systemic lupus erythematosus: impact of disease activity","volume":"8","author":"Touma","year":"2024","journal-title":"BMC Rheumatol"},{"key":"2025121606200880000_11.3.e006106.8","first-page":"1190","article-title":"Fatigue, patient reported outcomes, and objective measurement of physical activity in systemic lupus erythematosus","volume":"25","author":"Mahieu","year":"2016","journal-title":"Lupus (Los Angel)"},{"key":"2025121606200880000_11.3.e006106.9","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kes165"},{"key":"2025121606200880000_11.3.e006106.10","doi-asserted-by":"crossref","DOI":"10.1186\/s12955-019-1151-8","article-title":"Development and content validity of the Lupus Foundation of America rapid evaluation of activity in lupus (LFA-REALTM): a patient-reported outcome measure for lupus disease activity","volume":"17","author":"Askanase","year":"2019","journal-title":"Health Qual Life Outcomes"},{"key":"2025121606200880000_11.3.e006106.11","doi-asserted-by":"crossref","first-page":"162","DOI":"10.1097\/RHU.0000000000002204","article-title":"The Lupus Foundation of America Rapid Evaluation of Activity in Lupus Patient-Reported Outcome Predicts Health-Related Quality of Life, Fatigue, and Work Productivity Impairment: Data From the Almenara Lupus Cohort","volume":"31","author":"Ugarte-Gil","year":"2025","journal-title":"J Clin Rheumatol"},{"key":"2025121606200880000_11.3.e006106.12","doi-asserted-by":"crossref","DOI":"10.1136\/lupus-2020-000471","article-title":"Quick Systemic Lupus Activity Questionnaire (Q-SLAQ): a simplified version of SLAQ for patient-reported disease activity","volume":"8","author":"Svenungsson","year":"2021","journal-title":"Lupus Sci Med"},{"key":"2025121606200880000_11.3.e006106.13","doi-asserted-by":"crossref","DOI":"10.3390\/biotech12040062","article-title":"Tracking of Systemic Lupus Erythematosus (SLE) Longitudinally Using Biosensor and Patient-Reported Data: A Report on the Fully Decentralized Mobile Study to Measure and Predict Lupus Disease Activity Using Digital Signals-The OASIS Study","volume":"12","author":"Jupe","year":"2023","journal-title":"BioTech (Basel)"},{"key":"2025121606200880000_11.3.e006106.14","unstructured":"Minist\u00e8re De La Sant\u00e9 Et Des Services Sociaux Du Qu\u00e9bec . Framework for partnership approaches between users, their families and health and social services actors. 2018."},{"key":"2025121606200880000_11.3.e006106.15","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23887"},{"key":"2025121606200880000_11.3.e006106.16","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kex200"},{"key":"2025121606200880000_11.3.e006106.17","doi-asserted-by":"publisher","DOI":"10.1007\/BF02310555"},{"key":"2025121606200880000_11.3.e006106.18","first-page":"728","article-title":"Validation of the LupusPRO version 1.8: an update to a disease-specific patient-reported outcome tool for systemic lupus erythematosus","volume":"27","author":"Azizoddin","year":"2018","journal-title":"Lupus (Los Angel)"},{"key":"2025121606200880000_11.3.e006106.19","doi-asserted-by":"crossref","first-page":"1542","DOI":"10.1002\/acr.22349","article-title":"Development and validation of the Lupus Impact Tracker: a patient-completed tool for clinical practice to assess and monitor the impact of systemic lupus erythematosus","volume":"66","author":"Jolly","year":"2014","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"2025121606200880000_11.3.e006106.20","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0098883","article-title":"Construct and Criterion Validity of the Euro Qol-5D in Patients with Systemic Lupus Erythematosus","volume":"9","author":"Wang","year":"2014","journal-title":"PLoS ONE"},{"key":"2025121606200880000_11.3.e006106.21","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.081022"},{"key":"2025121606200880000_11.3.e006106.22","doi-asserted-by":"crossref","first-page":"811","DOI":"10.1002\/acr.23718","article-title":"The Impact of Belimumab and Rituximab on Health-Related Quality of Life in Patients With Systemic Lupus Erythematosus","volume":"71","author":"Parodis","year":"2019","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"2025121606200880000_11.3.e006106.23","doi-asserted-by":"crossref","first-page":"639","DOI":"10.1093\/rheumatology\/keae120","article-title":"Lupus Low Disease Activity State and organ damage in relation to quality of life in systemic lupus erythematosus: a cohort study with up to 11 years of follow-up","volume":"64","author":"Parodis","year":"2025","journal-title":"Rheumatology (Oxford)"},{"key":"2025121606200880000_11.3.e006106.24","doi-asserted-by":"crossref","DOI":"10.1186\/s13075-020-02334-5","article-title":"Articular involvement, steroid treatment and fibromyalgia are the main determinants of patient-physician discordance in systemic lupus erythematosus","volume":"22","author":"Elefante","year":"2020","journal-title":"Arthritis Res Ther"},{"key":"2025121606200880000_11.3.e006106.25","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.2023-0721"},{"key":"2025121606200880000_11.3.e006106.26","first-page":"501","article-title":"Discordance of patient and physician health status concerns in systemic lupus erythematosus","volume":"27","author":"Golder","year":"2018","journal-title":"Lupus (Los Angel)"},{"key":"2025121606200880000_11.3.e006106.27","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2021-222054"}],"container-title":["RMD Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/rmdopen-2025-006106","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,16]],"date-time":"2025-12-16T14:20:27Z","timestamp":1765894827000},"score":1,"resource":{"primary":{"URL":"https:\/\/rmdopen.bmj.com\/lookup\/doi\/10.1136\/rmdopen-2025-006106"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7]]},"references-count":27,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2025,9,23]]},"published-print":{"date-parts":[[2025,7]]}},"alternative-id":["10.1136\/rmdopen-2025-006106"],"URL":"https:\/\/doi.org\/10.1136\/rmdopen-2025-006106","relation":{},"ISSN":["2056-5933"],"issn-type":[{"value":"2056-5933","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,7]]}}}