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)

Antonin Satrin¹, Matteo Piga², Mariele Gatto³, Yurilis Fuentes-Silva⁴, José A Gomez Puerta⁵, Ivan Padjen⁶, Guillermo Pons-Estel⁷, Manuel F Ugarte-Gil⁸, Carlos Enrique Toro-GutiÉrrez⁹, Alexandra Legge¹⁰, Ali Duarte-Garcia¹¹, François Chasset¹², Ioannis Parodis¹³, Katia Baumgaertner¹, Laurent Chiche¹⁴, Odirlei A Monticielo¹⁵, Omondi Oyoo¹⁶, Raquel Faria¹⁷, Shinji Izuka¹⁸, Sofia Silva-Ribeiro¹⁹, Galymzhan Togizbayev²⁰, Daniela Opris-Belinski²¹, Lina El Kibbi²², Amita Aggarwal²³, Mithu Maheswaranathan²⁴, Tai-Ju Lee²⁵, Sheilla Achieng²⁶, Anastasiia Shumilova²⁷, Ricard Cervera²⁸, Gamal Chehab²⁹, Faisal Parlindungan³⁰, Sander Van Leuven³¹, Karoline Lerang³², Jeanette Andersen³³, Francesca Marchiori³³, Zoe Karakikla-Mitsakou³³, Christelle Sordet¹, Laurent Arnaud¹; international SLAKE development group

Affiliations

¹ Department of Rheumatology, National Reference Center for Autoimmune Diseases (RESO, Strasbourg Academic Hospitals, Strasbourg, France).
² Rheumatology Unity, University Clinic AOU Cagliari, Department of Medical Science and Public Health, University of Cagliari, Cagliari, Italy.
³ Academic Rheumatology Centre, Department of Clinical and Biological Sciences, University of Turin, Mauriziano Hospital, Turin, Italy.
⁴ Departamento de Medicina, Universidad de Oriente, Ciudad Bolívar, Venezuela.
⁵ Rheumatology Department, Hospital Clínic, University of Barcelona and IDIBAPS, Barcelona, Spain.
⁶ 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.
⁷ Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Grupo Oroño, Rosario, Argentina.
⁸ Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur. Lima. Peru and Rheumatology Department. Hospital Guillermo Almenara Irigoyen, EsSalud. Lima, Peru.
⁹ Reference Center of Osteoporosis and Rheumatology, Pontificia Javeriana University, Cali, Colombia.
¹⁰ Division of Rheumatology, Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
¹¹ Division of Rheumatology, Mayo Clinic. Rochester, Minnesota, USA.
¹² Sorbonne Université, faculté de médecine, service de dermatologie et allergologie, hôpital Tenon, INSERM U1135 CIMI, Paris, France.
¹³ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, and Center for Molecular Medicine (CMM), Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
¹⁴ Service de Médecine Interne, Hôpital Européen, Marseille, France.
¹⁵ Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil.
¹⁶ Rheumatology Unit, Department of Medicine, Faculty of health Sciences, University of Nairobi, Nairobi, Kenya.
¹⁷ 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.
¹⁸ Department of Allergy and Rheumatology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
¹⁹ Center for Research and Social Intervention (CIS-Iscte), Iscte-University Institute of Lisbon, Portugal, Lisbon.
²⁰ Department of rheumatology, Khazakhstan, Almaty.
²¹ Spitalul Clinic Sfânta Maria, Universitatea de Medicină și Farmacie Carol Davila Bucharest, Romania.
²² Division of Rheumatology, Department of Internal Medicine, SMC Healthcare, Arab Adult Arthritis Awareness Group (AAAA Group), Riyadh, Saudi Arabia.
²³ Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
²⁴ Division of Rheumatology and Immunology, Duke University School of Medicine, Durham, North Carolina, USA.
²⁵ Revision of Rheumatology, Immunology, and Allergy, Department of Medicine, National Taiwan University Hospital Hsinchu Branch, Hsinchu, Taiwan.
²⁶ Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatology Sciences, The University of Manchester, United Kingdom.
²⁷ Laboratory of thromboinflammation, V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation.
²⁸ Department of Autoimmune Diseases, Hospital Clínic, University of Barcelona and IDIBAPS, Barcelona, Catalonia, Spain.
²⁹ Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University, Düsseldorf, Germany.
³⁰ Rheumatology Division, Department of Internal Medicine, Faculty of Medicine, Universitas Indonesia, Rumah Sakit Universitas Indonesia, Depok, Indonesia.
³¹ Department of Rheumatology, Radboud University Medical Center, Nijmegen, the Netherlands.
³² Department of Rheumatology, Rikshospitalet/Oslo University Hospital, Norway, -, Oslo.
³³ Lupus Europe, Belgium.

PMID: 41386268
DOI: 10.1093/rheumatology/keaf649

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)

Antonin Satrin et al. Rheumatology (Oxford). 2026.

. 2026 Feb 4;65(2):keaf649.

doi: 10.1093/rheumatology/keaf649.

Authors

Affiliations

¹ Department of Rheumatology, National Reference Center for Autoimmune Diseases (RESO, Strasbourg Academic Hospitals, Strasbourg, France).
² Rheumatology Unity, University Clinic AOU Cagliari, Department of Medical Science and Public Health, University of Cagliari, Cagliari, Italy.
³ Academic Rheumatology Centre, Department of Clinical and Biological Sciences, University of Turin, Mauriziano Hospital, Turin, Italy.
⁴ Departamento de Medicina, Universidad de Oriente, Ciudad Bolívar, Venezuela.
⁵ Rheumatology Department, Hospital Clínic, University of Barcelona and IDIBAPS, Barcelona, Spain.
⁶ 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.
⁷ Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Grupo Oroño, Rosario, Argentina.
⁸ Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur. Lima. Peru and Rheumatology Department. Hospital Guillermo Almenara Irigoyen, EsSalud. Lima, Peru.
⁹ Reference Center of Osteoporosis and Rheumatology, Pontificia Javeriana University, Cali, Colombia.
¹⁰ Division of Rheumatology, Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
¹¹ Division of Rheumatology, Mayo Clinic. Rochester, Minnesota, USA.
¹² Sorbonne Université, faculté de médecine, service de dermatologie et allergologie, hôpital Tenon, INSERM U1135 CIMI, Paris, France.
¹³ Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, and Center for Molecular Medicine (CMM), Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
¹⁴ Service de Médecine Interne, Hôpital Européen, Marseille, France.
¹⁵ Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil.
¹⁶ Rheumatology Unit, Department of Medicine, Faculty of health Sciences, University of Nairobi, Nairobi, Kenya.
¹⁷ 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.
¹⁸ Department of Allergy and Rheumatology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.
¹⁹ Center for Research and Social Intervention (CIS-Iscte), Iscte-University Institute of Lisbon, Portugal, Lisbon.
²⁰ Department of rheumatology, Khazakhstan, Almaty.
²¹ Spitalul Clinic Sfânta Maria, Universitatea de Medicină și Farmacie Carol Davila Bucharest, Romania.
²² Division of Rheumatology, Department of Internal Medicine, SMC Healthcare, Arab Adult Arthritis Awareness Group (AAAA Group), Riyadh, Saudi Arabia.
²³ Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
²⁴ Division of Rheumatology and Immunology, Duke University School of Medicine, Durham, North Carolina, USA.
²⁵ Revision of Rheumatology, Immunology, and Allergy, Department of Medicine, National Taiwan University Hospital Hsinchu Branch, Hsinchu, Taiwan.
²⁶ Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatology Sciences, The University of Manchester, United Kingdom.
²⁷ Laboratory of thromboinflammation, V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation.
²⁸ Department of Autoimmune Diseases, Hospital Clínic, University of Barcelona and IDIBAPS, Barcelona, Catalonia, Spain.
²⁹ Department of Rheumatology, University Hospital Düsseldorf, Heinrich-Heine-University, Düsseldorf, Germany.
³⁰ Rheumatology Division, Department of Internal Medicine, Faculty of Medicine, Universitas Indonesia, Rumah Sakit Universitas Indonesia, Depok, Indonesia.
³¹ Department of Rheumatology, Radboud University Medical Center, Nijmegen, the Netherlands.
³² Department of Rheumatology, Rikshospitalet/Oslo University Hospital, Norway, -, Oslo.
³³ Lupus Europe, Belgium.

PMID: 41386268
DOI: 10.1093/rheumatology/keaf649

Abstract

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.

Keywords: Patient Medication Knowledge; Patient-Centered Care; digital health; digital technologies; education; educational status; health literacy; patient education; patients; systemic lupus erythematosus.

© The Author(s) 2025. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.

PubMed Disclaimer

LinkOut - more resources

Full Text Sources
- Ovid Technologies, Inc.
- Silverchair Information Systems

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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)

Affiliations

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)

Authors

Affiliations

Abstract

LinkOut - more resources

Full Text Sources