035. Developing an Education Resource for the paediatric BILAG index

Abstract

Background: There is currently no single biomarker to monitor disease activity in patients with juvenile-onset systemic lupus erythematosus (JSLE). Therefore an assessment tool that takes into account the wide range of clinical manifestations is used. Adapted from the British Isles Lupus Assessment Group (BILAG) index for adult patients, the paediatric (p-)BILAG index is a standardised JSLE disease activity assessment that is used in centres across the UK as part of the UK JSLE Cohort Study. The information collected by the pBILAG index is an extremely valuable resource, both to monitor the effectiveness of the patient's current treatment regimen but also as clinical data to support the translational research conducted by the UK JSLE Study Group. It is therefore vital that the index is completed accurately to ensure sensitive detection of active disease and timely treatment adjustment along with ensuring clinical data is accurately correlated to scientific research. Aims: To design an online, electronic educational resource for the pBILAG index in order to support the completion and improve the accuracy of the data collected by the tool. Methods: An educational need assessment was conducted via questionnaire and interview at the British Society for Paediatrics and Adolescent Rheumatology conference in November 2016. A further follow up questionnaire was distributed to all JSLE study group contributing centres via SurveyMonkey. The responses were analysed and were used to form the basis of the resource design. The resource was developed in conjunction with the University of Liverpool's Centre of Educational Development and Support. Results: 13 of the 23 Centre's responded to the questionnaire or engaged in an interview. From the responses, only 27% of healthcare professionals had received formal training in the completion of the pBILAG index. 80% of the responders thought that an education resource would be useful, and 66% thought the resource would be best in an electronic format. It was identified that the most appropriate target audience would be specialty trainees and research nurses and expressed that background information and practicalities of completing the index were needed, along with supporting clinical information for the glossary. With this in mind, a storyboard was produced for an electronic learning resource. This was then developed by the Centre of Educational Development and Support team into a prototype electronic educational resource that will be made available through the UK JSLE Study Group's website. Conclusions: This work has highlighted that there is a need for further support for trainees when completing the pBILAG index. This has been approached by harnessing an asynchronous e-learning format, which will allow the user to learn the practical aspects of completing the pBILAG index at a time that is convenient for them. Gaining feedback from subject matter experts along with intended resource users is a vital next step in evaluating the resource before its implementation. This project will be followed up by the development of a resource to support the clinical aspects of the pBILAG.