"What you always wanted to know about lupus and never dared to ask": proposal for a patient education program

Abstract

Introduction: studies on chronic diseases highlight the importance of patient education to promote adherence to treatment and improve prognosis. Objective: to know the main questions from patients with systemic lupus erythematosus (LES) as a starting point for the preparation of a Patient Education Program. Method: this was a descriptive and cross-sectional study. For six weeks, LES patients treated at the Rheumatology Department of the General Hospital wrote their questions about the disease in a white sheet and placed it in a box. Results: 260 consultations were analyzed and 111 sheets were completed, totaling 393 questions with an average of 3.54 questions per patient, which were classified into nine categories: treatment and prevention (18.8%); clinical framework and diagnostic (18.3%); etiology and pathophysiology (17.0%); prognosis and progression (16.3%); concept and epidemiology of the disease (8.1%); general guidelines (6.1%); contraception, pregnancy, and fertility (7.4%); psychological aspects and sexuality (6.9%); and excluded questions (1%). Conclusion: it was observed that most of the questions reflected themes often approached during medical consultations. Communication between the doctor, healthcare team, and patient needs to improve, and one strategy would be the development of a patient education program.