OP0312-PARE LUPUS100 INSIGHTS: THE KEY QUESTIONS THAT PATIENTS SEARCH ON LUPUS100.ORG
Authors: Z. Karakikla-Mitsakou, J. Andersen, C. Hjelmeset, F. Marchiori, A. Cornet
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> At EULAR 2023, the Lupus100 initiative was launched to address the issue of unreliable online sources by ensuring 95% of European lupus patients can access high-quality information in their native languages. This was made possible thanks to the effective collaboration between patients and doctors who worked together to create already 13 different language versions, available online. Reflecting on the first year since Lupus100's launch can provide valuable insights into patient engagement and information dissemination. <h3>Objectives:</h3> To analyse the most frequently consulted questions on the Lupus100 website to gauge patient concerns, pinpoint significant information needs, and identify any prevalent misconceptions. <h3>Methods:</h3> Google Analytics, user metrics such as page views, unique user counts, and content specifics were tracked from October 2022 to January 2024 to identify the resulting most commonly viewed questions among users and identify any trends. <h3>Results:</h3> The English site has attracted 151,225 views by 54,959 unique users. The multilingual websites have been similarly impactful. The top 10 questions looked at in detail were as follows: 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? The navigation analysis, using "heat maps" and mouse movements also revealed that a significant proportion of users focused on the short answers provided under each question rather than the longer explanatory texts giving additional background and deeper explanation. This data highlights the necessity for patient associations to tailor information that is both foundational (what is lupus, is it contagious) and in-depth (diet, association with other diseases,..), ensuring that patients can find answers to their most pressing questions. High user engagement with quick answers rather than full explanations also suggests a need for more accessible, concise information on lupus. <h3>Conclusion:</h3> The data from Lupus100.org allows for the shaping of therapeutic patient education based on the actual questions that patients have. Continual monitoring of the Lupus100 site will help gain further insights to tailor communication efforts to the evolving needs of the community. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</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>