Poor adherence to treatment is a significant problem in lupus, with multi-factorial causes, some of which patients will not easily talk with Doctors. To capture insights and make appropriate recommendations, Lupus Europe brought together 10 European Lupus patients (8 female, 2 male), representing diverse Lupus types and origins. Through 2 days interactive group sessions, guided by facilitators with lupus themselves, a working definition of treatment and main factors for poor adherence were identified.
Patients view treatment much broader than only medical: “Any product or activity that aims at improving the person with lupus’ quality of life”. Deeply understanding each part of their treatment, being able to raise questions, and feeling ownership for the treatment emerged as the 3 key pillars of adherence.
Patients plea to doctors is to (a) adhere to internationally recognized standards of care, or refer patients to specialists if they only have few lupus patients; (b) over-explain the importance of each treatment element to create commitment and avoid counter-productive internet searches; (c) acknowledge hearing symptoms described (even if judged irrelevant) to build trust; (d) create a treatment dialog where “YOUR prescriptions become OUR treatment plan”.
These messages and more are summarized in a letter to the medical community.
The panelists also created a letter to fellows living with lupus, advising how to tame their lupus, including concrete recommendations on medical follow-up, adherence, reliability of information, and a message of hope and support.
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