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).
Journal
Rheumatology (Oxford, England)
Journal Volume
65
Journal Issue
2
Start Page
Article number keaf649
ISSN
1462-0332
Date Issued
2026-02-04
Author(s)
Satrin, Antonin
Piga, Matteo
Gatto, Mariele
Fuentes-Silva, Yurilis
Puerta, José A Gomez
Padjen, Ivan
Pons-Estel, Guillermo
Ugarte-Gil, Manuel F
Toro-GutiÉrrez, Carlos Enrique
Legge, Alexandra
Duarte-Garcia, Ali
Chasset, François
Parodis, Ioannis
Baumgaertner, Katia
Chiche, Laurent
Monticielo, Odirlei A
Oyoo, Omondi
Faria, Raquel
Izuka, Shinji
Silva-Ribeiro, Sofia
Togizbayev, Galymzhan
Opris-Belinski, Daniela
El Kibbi, Lina
Aggarwal, Amita
Maheswaranathan, Mithu
Lee, Tai-Ju
Achieng, Sheilla
Shumilova, Anastasiia
Cervera, Ricard
Chehab, Gamal
Parlindungan, Faisal
Van Leuven, Sander
Lerang, Karoline
Andersen, Jeanette
Marchiori, Francesca
Karakikla-Mitsakou, Zoe
Sordet, Christelle
Arnaud, Laurent
et al.
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.
Subjects
Patient Medication Knowledge
Patient-Centered Care
digital health
digital technologies
education
educational status
health literacy
patient education
patients
systemic lupus erythematosus
Type
journal article