{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T16:03:00Z","timestamp":1790697780820,"version":"4.1.0"},"reference-count":10,"publisher":"BMJ","issue":"2","license":[{"start":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T00:00:00Z","timestamp":1783900800000},"content-version":"unspecified","delay-in-days":12,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Lupus Sci Med"],"accepted":{"date-parts":[[2026,6,23]]},"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Cognitive symptoms such as \u2018brain fog\u2019 are frequent and disabling in patients with SLE. We aimed to develop and validate the Lupus Brain Fog Severity Scale (LBFSS), the first patient-reported outcome measure (PROM) for cognitive symptoms in SLE.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The LBFSS was developed using a multi-step international approach involving healthcare professionals and patients with SLE. Patients provided free-text descriptions of brain fog, generating candidate domains through thematic analysis (step 1). Domains were rated for relevance (step 2) and those retained converted into self-assessable items (step 3). The pilot LBFSS was iteratively refined (step 4). The finalised LBFSS was validated (step 5) in a large international SLE cohort. Psychometric evaluation included internal consistency, exploratory factor analysis and assessment of construct, convergent, known-groups and criterion-related validity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In step 1, 147 SLE participants across 39 countries generated 21 domains for cognitive symptoms, of which 13 were retained in consensus (step 2), converted into self-assessable items (step 3) and iteratively refined using patient and physician feedback. In step 5, validation of the LBFSS instrument in 378 patients from 36 countries demonstrated high internal consistency (Cronbach\u2019s \u03b1=0.95) and a unidimensional structure explaining 62.2% of variance. LBFSS scores were significantly higher in participants reporting brain fog (p&lt;0.0001), confirming known-group validity. Construct validity was supported by significant correlations with functional impact and symptom severity (\u03c1=0.46\u20130.65, p&lt;0.0001), strong convergent validity with the Perceived Deficits Questionnaire-20 (\u03c1=0.84, p&lt;0.0001) while the discriminative performance for presence versus absence of self-reported brain fog was high (area under the curve=0.85).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The LBFSS is a new, valid and feasible PROM to assess brain fog and cognitive symptoms in SLE.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/lupus-2026-002148","type":"journal-article","created":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T11:40:35Z","timestamp":1783942835000},"page":"e002148","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["International development of a lupus-specific instrument to assess cognitive symptoms in patients with SLE: Lupus Brain Fog Severity Scale (LBFSS) study"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8077-8394","authenticated-orcid":false,"given":"Laurent","family":"Arnaud","sequence":"first","affiliation":[{"name":"Department of Rheumatology, National Reference Center for Autoimmune Diseases (RESO), H\u00f4pitaux Universitaires de Strasbourg, INSERM UMR-S 1109, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1126-8315","authenticated-orcid":false,"given":"Matteo","family":"Piga","sequence":"additional","affiliation":[{"name":"Rheumatology Unity, AOU Cagliari, Department of Medical Science and Public Health, University of Cagliari, Cagliari, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0647-929X","authenticated-orcid":false,"given":"Guillermo J","family":"Pons-Estel","sequence":"additional","affiliation":[{"name":"Regional Center for Autoimmune and Rheumatic Diseases (GO-CREAR), Rosario, Argentina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yurilis J","family":"Fuentes-Silva","sequence":"additional","affiliation":[{"name":"Departamento de Medicina, Universidad de Oriente, Ciudad Bolivar, Venezuela"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Herv\u00e9","family":"Devilliers","sequence":"additional","affiliation":[{"name":"Internal Medicine and Systemic Diseases Unit, University Hospital Centre Dijon, Dijon, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2956-1966","authenticated-orcid":false,"given":"Raquel","family":"Faria","sequence":"additional","affiliation":[{"name":"Unidade de Imunologia Cl\u00ednica \u2013 Unidade Local de Sa\u00fade Santo Ant\u00f3nio; UMIB - Unit for Multidisciplinary Research in Biomedicine, ICBAS - School of Medicine and Biomedical Sciences, University of Porto, Porto, Portugal"},{"name":"ITR - Laboratory for Integrative and Translational Research in Population Health, Porto, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1749-5719","authenticated-orcid":false,"given":"Ali","family":"Duarte-Garcia","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Mayo Clinic Minnesota, Rochester, Minnesota, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Guimar\u00e3es de Oliveira","sequence":"additional","affiliation":[{"name":"UDAI \u2013 Autoimmune Diseases and Immunology Unit, Internal Medicine Department, ULS T\u00e2mega e Sousa, Penafiel, Portugal"},{"name":"Unit for Multidisciplinary Research in Biomedicine (UMIB), School of Medicine and Biomedical Sciences (ICBAS), University of Porto, Porto, Portugal"},{"name":"i3S \u2013 Instituto de Investiga\u00e7\u00e3o e Inova\u00e7\u00e3o em Sa\u00fade, Universidade do Porto, Porto, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"Scolnik","sequence":"additional","affiliation":[{"name":"Rheumatology Section, Hospital italiano de Buenos Aires, Buenos Aires, Argentina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sander","family":"van Leuven","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eve","family":"Smith","sequence":"additional","affiliation":[{"name":"School of Infection and Immunity, University of Glasgow, Glasgow, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simone","family":"Appenzeller","sequence":"additional","affiliation":[{"name":"Departmento of Orthopedics, Rheumatology and Traumatology-Universidade Estadual de Campinas, Campinas, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ivan","family":"Padjen","sequence":"additional","affiliation":[{"name":"School of Medicine, University of Zagreb, Zagreb, Croatia"},{"name":"Division of Clinical Immunology and Rheumatology, Referral Centre for SLE and Related Diseases, Department of Internal Medicine, University Hospital Centre Zagreb, Zagreb, Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1441-5373","authenticated-orcid":false,"given":"Michelle A","family":"Petri","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessandra","family":"Bortoluzzi","sequence":"additional","affiliation":[{"name":"Rheumatology Unit, Department of Medical Sciences, University of Ferrara and Azienda Ospedaliero-Universitaria S.Anna, Ferrara, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4875-5395","authenticated-orcid":false,"given":"Ioannis","family":"Parodis","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, Center for Molecular Medicine (CMM), Stockholm, Sweden"},{"name":"Department of Rheumatology, Faculty of Medicine and Health, \u00d6rebro University, \u00d6rebro, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meggan","family":"Mackay","sequence":"additional","affiliation":[{"name":"Feinstein Institutes for Medical Research, Northwell Health System, Manhasset, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Faisal","family":"Parlindungan","sequence":"additional","affiliation":[{"name":"Rheumatology Division, Department of Internal Medicine, Faculty of Medicine Universitas Indonesia, Rumah Sakit Universitas Indonesia, Depok, Indonesia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Odirlei A","family":"Monticielo","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Department of Internal Medicine, Hospital de Cl\u00ednicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2696-031X","authenticated-orcid":false,"given":"Antonis","family":"Fanouriakis","sequence":"additional","affiliation":[{"name":"Rheumatology and Clinical Immunology Unit, Attikon University Hospital, National Kapodistrian University of Athens Medical School, Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Kleitz","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4278-9049","authenticated-orcid":false,"given":"Andrea M","family":"Knight","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Hospital for Sick Children, Toronto, Ontario, Canada"},{"name":"Neurosciences and Mental Health Program, SickKids Research Institute, Toronto, Ontario, Canada"},{"name":"Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"Philippi","sequence":"additional","affiliation":[{"name":"Department of Neuropsychology, H\u00f4pitaux Universitaires de Strasbourg, Strasbourg, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9416-7383","authenticated-orcid":false,"given":"Alberta","family":"Hoi","sequence":"additional","affiliation":[{"name":"School of Clinical Sciences, Monash University, Melbourne, Victoria, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zoe","family":"Karakikla-Mitsakou","sequence":"additional","affiliation":[{"name":"Lupus Europe, Brussels, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sofia","family":"Silva Ribeiro","sequence":"additional","affiliation":[{"name":"Center for Research and Social Intervention (CIS-Iscte), ISCTE-University Institute of Lisbon, Lisbon, Portugal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemarie","family":"Sluijmers","sequence":"additional","affiliation":[{"name":"Lupus Europe, Brussels, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aldevina","family":"Sturiene","sequence":"additional","affiliation":[{"name":"Lupus Europe, Brussels, 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