International development and validation of a multilingual bank of items for the self-assessment of essential knowledge by systemic lupus erythematosus patients: the SLE Knowledge Assessment score (SLAKE)

Satrin A. Piga M. Gatto M. Fuentes-Silva Y. Puerta J.A.G. Padjen I. Pons-Estel G. Ugarte-Gil M.F. Toro-Gutiérrez C.E. Legge A. Duarte-Garcia A. Chasset F. Parodis I. Baumgaertner K. Chiche L. Monticielo O.A. Oyoo O. Faria R. Izuka S. Silva-Ribeiro S. Togizbayev G. Opris-Belinski D. El Kibbi L. Aggarwal A. Maheswaranathan M. Lee T.-J. Achieng S. Shumilova A. Cervera R. Chehab G. Parlindungan F. Van Leuven S. Lerang K. Andersen J. Marchiori F. Karakikla-Mitsakou Z. Sordet C. Arnaud L. Alexander T. Andreoli L. Araujo O. Araminta A. Bellochi C. Beretta L. Bergier H. Bulina I. Bultink I. Calzada-Hernández J. Cardamone C. Chang T.-W. Chatterjee R. Cobilinschi C. Conti F. Cruciani C. Damanik J. Depascale R. Dusing C. Espinosa G. Franceshini F. Redi M. García-Hirsh S. Gasparin A.A. Gauckler P. Geneton S. Goulenok T. Gunnarsson I. Halabi H. Hoi A. van Ingen I. Isnardi C. Jägerback S. Kahlenberg M. Kane B. Kawka L. Khmelinskii N. Lan T.-Y. Limper M. Louthrenoo W. Macieira C. Madhumita M. Mak A. Moe S.R. Hhamouchi I. Manfredi L. Marcec R. Marinho A. Meisalu S. Morel N. Mosca M. Mucke J. Navarra S. Nurbaeva K. Olesinska M. Orsolini G. Pamfil C. Petraitis M. Pettersson S. Ileckyte M. Ponnarasu S. Popa D. Chitra R. Rahulan L. Ramirez G. Reshetnyak T. Richez C. Said S.S. Salerno R. Sarmiento-Monroy J. Sartori N.S. Saulescu I. Sciascia S. Sholkina P. Sjöwall C. Sztejkowski C. Thorud M. Touma Z. Tres G.L. Triggiani M. Truglia S. Tsang-A-Sjoe M. Caic M. Ziade N.
1 February 2026 Oxford University Press

Rheumatology
2026 #65 Issue 2

Objectives Patient education is increasingly acknowledged as an important aspect of the management of systemic lupus erythematosus (SLE). The aim of the study was to develop the SLE Knowledge Assessment score (SLAKE), a digital multilingual self-assessment tool designed to quantify essential SLE knowledge. Methods International healthcare professionals (HCPs) and patient representatives engaged in a multi-step process to: identify essential SLE knowledge domains, select key domains via rating, and generate an item bank of 394 questions across 11 domains, which was then adapted into 19 languages. For validation, participants completed 44 questions (including 33 randomly selected), with scores calculated for total knowledge and the 11 specific domains. Statistical analyses examined associations between scores and demographic, clinical, and educational variables. Results SLAKE was used by 1182 SLE participants (1120 [94.8%] women, median age: 45 years [IQR: 35-54 years]), with a median SLE duration of 10 years (IQR: 4-20 years). The median SLAKE score was 37 (IQR: 34-40) of a maximum of 44 points while the median score across the 11 SLAKE domains ranged between 3 and 4 over a maximum of 4 points. There was a significant positive association between SLAKE score and SLE duration (p= 0.006), previous participation to a patient education course or a patient training for lupus (p< 0.0001) and the education level (p< 0.0001) but not with age (p= 0.48) or gender (p= 0.39). Conclusion SLAKE is a valid, multilingual, digital self-assessment tool that effectively measures essential SLE knowledge. Its randomized question bank and domain-specific scoring enable targeted education, ultimately supporting better disease management.

digital health , digital technologies , education , educational status , health literacy , patient education , Patient Medication Knowledge , Patient-Centered Care , patients , systemic lupus erythematosus

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Department of Rheumatology, National Reference Center for Autoimmune Diseases, RESO, Strasbourg Academic Hospitals, Strasbourg, France
Rheumatology Unity, University Clinic AOU Cagliari, Department of Medical Science and Public Health, University of Cagliari, Cagliari, Italy
Academic Rheumatology Centre, Department of Clinical and Biological Sciences, University of Turin, Mauriziano Hospital, Turin, Italy
Departamento de Medicina, Universidad de Oriente, Ciudad Bolívar, Venezuela
Rheumatology Department, Hospital Clínic, University of Barcelona and IDIBAPS, Barcelona, Spain
University of Zagreb, School of Medicine, Division of Clinical Immunology and Rheumatology, Department of Internal Medicine, Croatian Referral Centre for SLE and Related Diseases, University Hospital Centre Zagreb, Zagreb, Croatia
Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Grupo Oroño, Rosario, Argentina
Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur. Lima, Peru and Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Lima, Peru
Reference Center of Osteoporosis and Rheumatology, Pontificia Javeriana University, Cali, Colombia
Division of Rheumatology, Department of Medicine, Dalhousie University, Halifax, NS, Canada
Division of Rheumatology, Mayo Clinic, Rochester, MN, United States
Sorbonne Université, Faculté de médecine, Service de dermatologie et allergologie, Hôpital Tenon, INSERM U1135 CIMI, Paris, France
Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, Center for Molecular Medicine (CMM), Stockholm, Sweden
Service de Médecine Interne, Hôpital Européen, Marseille, France
Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil
Rheumatology Unit, Department of Medicine, Faculty of health Sciences, University of Nairobi, Nairobi, Kenya
Unidade de Imunologia Clínica - Unidade Local de Saúde Santo António, UMIB - Unit for Multidisciplinary Research in Biomedicine, ICBAS - School of Medicine and Biomedical Sciences, University of Porto, ITR - Laboratory for Integrative and Translational Research in Population Health, Porto, Portugal
Department of Allergy and Rheumatology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
Center for Research and Social Intervention (CIS-Iscte), Iscte-University Institute of Lisbon, Lisbon, Portugal
Department of rheumatology, Almaty, Kazakhstan
Spitalul Clinic Sfânta Maria, Universitatea de Medicinǎ i Farmacie Carol Davila, Bucharest, Romania
Division of Rheumatology, Department of Internal Medicine, SMC Healthcare, Arab Adult Arthritis Awareness Group (AAAA Group), Riyadh, Saudi Arabia
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India
Division of Rheumatology and Immunology, Duke University School of Medicine, Durham, NC, United States
Revision of Rheumatology, Immunology, and Allergy, Department of Medicine, National Taiwan University Hospital Hsinchu Branch, Hsinchu, Taiwan
Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatology Sciences, The University of Manchester, United Kingdom
Laboratory of thromboinflammation, V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation
Department of Autoimmune Diseases, Hospital Clínic, University of Barcelona and IDIBAPS, Catalonia, Barcelona, Spain
Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University, Düsseldorf, Germany
Rheumatology Division, Department of Internal Medicine, Faculty of Medicine, Universitas Indonesia, Rumah Sakit Universitas Indonesia, Depok, Indonesia
Department of Rheumatology, Radboud University Medical Center, Nijmegen, Netherlands
Department of Rheumatology, Rikshospitalet, Oslo University Hospital, Oslo, Norway
Lupus Europe, Belgium
Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden

Department of Rheumatology
Rheumatology Unity
Academic Rheumatology Centre
Departamento de Medicina
Rheumatology Department
University of Zagreb
Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR)
Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas
Reference Center of Osteoporosis and Rheumatology
Division of Rheumatology
Division of Rheumatology
Sorbonne Université
Division of Rheumatology
Service de Médecine Interne
Division of Rheumatology
Rheumatology Unit
Unidade de Imunologia Clínica - Unidade Local de Saúde Santo António
Department of Allergy and Rheumatology
Center for Research and Social Intervention (CIS-Iscte)
Department of rheumatology
Spitalul Clinic Sfânta Maria
Division of Rheumatology
Department of Clinical Immunology and Rheumatology
Division of Rheumatology and Immunology
Revision of Rheumatology
Centre for Musculoskeletal Research
Laboratory of thromboinflammation
Department of Autoimmune Diseases
Department of Rheumatology
Rheumatology Division
Department of Rheumatology
Department of Rheumatology
Lupus Europe
Department of Rheumatology

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