BILAG-2004 is a comprehensive disease activity instrument for SLE but administrative burden and frequency of errors limits its use in routine practice. We aimed to develop a new tool, known as “Easy-BILAG”, for accurate, time-efficient scoring of BILAG-2004 in routine practice, with full fidelity to the original instrument.
Frequency of SLE manifestations was collated from the UK BILAG-biologics registry dataset. Easy-BILAG prototype formats were drafted to address known issues affecting speed and accuracy of completion. Accuracy and usability of the finalised, expert-verified Easy-BILAG was tested against standard format BILAG-2004 in a validation workbook exercise of case vignettes. 33 rheumatology professionals from 14 UK centres and ranging in expertise, completed the workbook.
Easy-BILAG incorporates the most frequently encountered features of SLE, plus complete constitutional and renal domains into a rapid single page assessment. An embedded glossary and colour-coding assists scoring each organ domain. An optional second page captures all rarer items if needed. In the validation exercise, Easy-BILAG yielded significantly higher scoring accuracy (96.7%) than standard BILAG-2004 documentation (87.8%, p≤0.001), with better inter-rater agreement. Gains in accuracy with Easy-BILAG were most apparent among general hospital rheumatologists, leading to equivalent accuracy as tertiary centre rheumatologists (93.3% vs 96.6%, p=0.17). Easy-BILAG was completed significantly faster than the standard format and was rated as intuitive and well adapted for routine practice by clinicians.
Easy-BILAG facilitates more rapid and accurate scoring of BILAG-2004 and could assist professionals in all settings integrate SLE disease activity recording into routine care.