Background Much remains to be discovered about Lupus. Not just disease mechanisms and new treatments, but also better understanding the day to day issues faced by patients and their relatives, the impact on social and psychological functioning,… To help people living with lupus bring their life experience to the table, LUPUS EUROPE created patient panels, by and for people with lupus.
Methods Over the past years, Lupus Europe conducted 3 patient panels. Each panel, from Friday evening to Sunday afternoon brought together 10 to 12 diverse European (semi-)naïve patients around 1 theme, with 8–10 ‘activities’ exploring the subject. The panels were moderated by people living with lupus themselves.
Results Our panels have brought insights that we think are relevant for doctors and researchers in lupus. Amongst those:
Patients define treatment much broader than doctors. They view treatment as ‘any product or activity that aims at improving the person with lupus’ quality of life’, not just prescription drugs.
The patient–doctor relationship impacts adherence, with unmet needs in the area of ‘understanding each component of the treatment’, ‘having concerns raise acknowledged even if not irrelevant to diagnose’ and ‘feeling ownership for the treatment plan’.
Youth acknowledge their top issue is taking pills every day, but preferred to focus on collective issues. Young women’s feeling of guilt (imposing limits, having children, ‘contaminating’ them…) is likely underestimated by doctors and patient organizations.
Young people are more positive on their life than average patients. They perceive lupus as being ‘all over their lives’, but want to make sure they are not ruled by it, and want to have no obligations relating to it…
Many additional panel conclusions are available on https://www.lupus-europe.org/patient-panels/
Conclusions Lupus Europe’s panels provide an opportunity to gather insights that can feed the patient-doctor relationship and contribute to a better understanding of the disease.
Acknowledgements Lupus Europe is mostly financed by contributions of industry – GSK, UCB, Idorsia, Boehringer, Janssen, Leo Pharma
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