OP0219 PARE LUPUS EUROPE YOUTH PANEL – WHAT WE LEARNED FROM YOUNG PEOPLE LIVING WITH LUPUS
Authors: Alain Cornet, Jeanette Andersen
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background</h3> Since 2014, Lupus Europe conducts patient panels, where 10 to 12 persons from all over Europe living with lupus discuss the selected topic guided by facilitators living with lupus themselves. This allows to capture qualitative feedback of relevance, without the obstacle of the "white blouse". In 2018, 10 Young (18-27) European Lupus patients (8 female, 2 male) with diverse Lupus types met to discuss "Lupus and youth". <h3>Objectives</h3> Understand specificity of being young with lupus to better include young patients in Lupus groups action plans <h3>Methods</h3> 11 young patients, mostly with little or no involvement in patient groups were recruited through Lupus Europe's network. They were asked to send ahead of time their top challenges/issues living with lupus as well as their key questions for the panel. this input was used to build the 2 days program itself. Mid May, 10 of the 11 met face-to-face in Brussels, and explored multiple aspects of their input though 7 specifically designed interactive workshops <h3>Results</h3> While they considered taking pills every day as a key problem, they preferred to focus on the collective issues of being understood by friends and family and having to live with limitations. A big "Wow" was the feeling of guilt expressed by several female participants (guilt of imposing limits to their partners, guilt of not being able to do as much as others, …), a very important underlying dimension of their social and affective life, which is likely much misunderstood by doctors and patient organizations; young people with lupus remain fundamentally more positive on their life with lupus than the average patients. While they perceive lupus as being "all over their lives", they refuse to be ruled by it … They view the future of a LUPUS EUROPE youth group as a "virtual group" on social media, with minimal commitment required, but bringing together "friends" around highly visual messages, short stories and the exchange of ideas that could lead to small group gatherings. On the medical front, when we probed what would drive them to consider joining a clinical trial, clear first media is their lupus doctor, second are national lupus groups and LUPUS EUROPE. Other medias have a very limited impact. <h3>Conclusion</h3> Young patients needs must be addressed in a more aspirational way and using more virtual tools than average patients (more focused on health issues and geographic proximity). The feeling of guilt of young women with regards to their affective life must be further explored to give them confidence and reassurance. <h3>Reference</h3> [1] Lupus Europe Patient panel 3 project report, acvailable on request at secretariat@lupus-europe.org <h3>Disclosure of Interests</h3> Alain Cornet Grant/research support from: No direct financial grants from Pharmaceutical companies, but some grants accrued LUPUS EUROPE does, in the form of Grants or payment for attending advisory boards or providing patient views, Speakers bureau: I have been involved in GSK panels to provide patient perspective. However, the minor service fee obtained accrued to LUPUS EUROPE ratyher than the company, Jeanette Andersen: None declared