Background Systemic Lupus Erythematosus is a chronic autoimmune disease. To prevent short-term and long-term burden of the disease, health education is an essential complement to drug therapy.
Objectives The aim of this study was to collect information to design a patient education program (PEP) for patients with systemic lupus erythematosus (SLE), based as much as possible on their expectations.
Methods Three different approaches were used for consulting patients: 1. A questionnaire on their expectations in terms of a PEP was sent to the members of SLE associations and offered to patients at the French reference center for SLE. 2. A focus group was conducted and 3. After the teaching sessions, satisfaction questionnaires were also evaluated.
Results The patients who answered the expectations questionnaire (n=422, women/men sex ratio = 12.6) showed interest in the PEP in great numbers (70.4%). Their expectations were broad, and covered the topics of pregnancy (90% of the women under age 40), the evolution of the disease (80.8%), the respective roles of the different treatments (70.4%) and also the management of everyday symptoms: fatigue and pain (66.4%). The focus group (8 people) highlighted the need for improving how the diagnosis of the disease was delivered, and also revealed the loneliness and the guilt experienced by some patients toward their relatives. Satisfaction questionnaires confirmed these expectations for the PEP, and even extended them to new topics: the mechanism behind SLE, travel and leisure, and possible accommodations in the workplace.
Conclusions the direct consultation of patients with SLE targeted by a PEP program specific to systemic lupus allowed us to confirm and adapt the topics and the content of a program designed by medical staff.
Disclosure of Interest None Declared