Increasing disease-specific knowledge in patients with SLE through a structured one-day seminar : results of a randomized, controlled study

Abstract

Objective: Systemic lupus erythematosus (SLE) is a complex autoimmune disease, and its diagnosis can cause considerable anxiety and uncertainty for those affected. This study aimed to investigate the effect of a one-day educational seminar on disease-specific knowledge among patients with SLE. Additionally, the influence on subjective needs, the cognitive and emotional impact of the disease, and health-related lifestyle were examined. Methods: Patients were randomly assigned in a 1:1 ratio to an intervention group or a waiting list control group. Both groups attended the seminar. Disease-specific knowledge was measured using a multiple-choice questionnaire. The primary objective was the change in knowledge after the intervention. Results: Thirty-nine participants were included in the analysis. The mean score difference between the waiting list control group and the intervention group was 3.4 points out of a maximum of 20 (95% CI 1.8 to 5) immediately after the seminar and 1.6 (95% CI −0.6 to 3.5) three months later. Pooled data from both groups showed an increase in SLE-specific knowledge from 13.7 points to 17.3 points. Three months later, SLE-specific knowledge remained above the initial value at 15.4 points. However, no influence on lifestyle was observed. Conclusion: A one-day seminar can increase disease-specific knowledge and reduce unmet informational needs but does not lead to lifestyle modifications.