Abstract
Systemic sclerosis (SSc) is a multifaceted disease, and its diagnosis triggers substantial anxiety and uncertainty for those affected. Currently, there are no valid data describing the impact of disease-specific patient education on the disease knowledge available. We created a two-day, online educational seminar to provide SSc patients with disease-specific information. The primary objective of the study was to observe the change in the disease-specific knowledge of the patients. A total of 118 patients were randomized into an intervention group and a waiting list control group. The change in knowledge was assessed using a multiple-choice test. The intervention group completed the questionnaire before, directly after, and 3 months after the seminar, while the waiting list control group also took the test 3 months before the seminar to rule out nonspecific learning. The primary outcome measure was the score difference between baseline and 3 months after baseline. The study was registered in the German Clinical Trials Register (protocol code DRKS00024915). The educational seminar resulted in a small, but measurable, increase in knowledge. While the two tests in the waiting list control group prior to the seminar did not show a nonspecific increase in disease knowledge, the intervention led to a numerical increase in knowledge (mean ± sd score difference 0.34 ± 1.31, 95% CI (- 0.23; 0.86), p = 0.26) that did not reach statistical significance. Multiple linear regression analysis showed that being a member of a self-help group (β = 1.12; p = 0.03) is a positive predictor of a higher disease knowledge. Although highly appreciated by participants, a two-day online seminar may not be the most appropriate format to generate measurable disease-specific knowledge. Self-help group membership was a positive predictor of a higher level of disease-specific knowledge prior to the educational seminar and should be recommended to every affected person.