AB1048 LUPUS100 INSIGHTS: A YEAR OF LEARNINGS
Authors: Z. Karakikla-Mitsakou, D. Tremarias, A. Cornet
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Upon recognising the dearth of reliable information on lupus online, the Lupus100 project was conceived. The aim of Lupus100 is to provide access to quality information about lupus to 95% of European lupus patients in their own language, therefore eliminating a big barrier to quality information. The project was made possible thanks to the effective collaboration between patients and doctors who worked together to create the English version and to translate the text in multiple European languages. After 12 months of the Lupus100 website being live, there are multiple learnings from this project. <h3>Objectives:</h3> Understand which questions are most consulted on the Lupus100 website over a 13-month period, with a goal to discerning the most important information and identifying possible misconceptions. <h3>Methods:</h3> Google Analytics, user metrics such as page views, unique user counts, and content specifics were tracked from October 2022 to December 2023. Subsequently, the resulting top questions were identified. <h3>Results:</h3> Since ist launch in October 2022, the English version oft he website, has seen consistent user and site traffic having recorded 146,373 views from 53,571 distinct users. The multilingual sites have showed very high engagement as well. The top 10 questions looked at in detail: 1.What is lupus? 2.Is lupus contagious? 3.What are the different forms of lupus? What is drug induced lupus? 4.Can I have a normal sex life? 5.Is there a relationship between lupus and stress? 6.Why does lupus mainly affect women? Does male lupus exist? 7.What is neonatal lupus? 8.Can lupus be associated with other autoimmune diseases? 9.Should we follow a special diet in lupus? 10.I have lupus. I also have symptoms of Sjogren's syndrome or antiphospholipid syndrome. Do I really have several diseases? Persistent traffic to questions such as "is lupus contagious?" hints at potential knowledge gaps and underscores the urgency for valid and factual content on lupus reaching patients. The analysis also revealed that a high number of views could not be linked to specific questions as users focused on the short answers available rather than consulting the full answers on its specific page. New tools have been implemented to capture such data onwards. <h3>Conclusion:</h3> The analysis of lupus100.org most frequently asked questions provides important feedback on areas where additional information is necessary. These learnings have potential relevance for the content of therapeutic patient education programmes, emphasising the importance of accurate and targeted information for patients in line with knowledge gaps. Patient organisations should also calibrate information produced, striking a balance between addressing basic misconceptions and providing advanced information, in order to optimise patient education. An ongoing monitoring of lupus100.org can provide guidance to gear communication programs to most pressing needs. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Disclosure of interest:</h3> None of the authors has direct conflict of Interest. However, LUPUS EUROPE is funded mostly by grants or donations from Pharmaceutical Companies (Astra Zeneca, Biogen, BMS, Boehringer-Ingelheim, Galapagos, GSK, Idorsia, Janssen, Merck, Novartis, Otsuka, Roche, UCB), none of which exceeds 20% of total funds collected, and none having a say on the content of our studies. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>