Department of Internal Medicine II, Rheumatology, University Hospital Halle (Saale), Ernst-Grube-Straße 40, 06120, Halle (Saale), Germany.
Clinic for Pediatrics I, University Hospital Halle (Saale), Halle (Saale), Germany.
Sci Rep. 2024 Jun 14;14(1):13767. doi: 10.1038/s41598-024-64532-4.
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.
系统性硬化症 (SSc) 是一种多方面的疾病，其诊断会给患者带来很大的焦虑和不确定性。目前，没有有效的数据描述疾病特异性患者教育对疾病知识的影响。我们创建了一个为期两天的在线教育研讨会，为 SSc 患者提供疾病特异性信息。该研究的主要目的是观察患者疾病特异性知识的变化。共有 118 名患者被随机分为干预组和候补名单对照组。使用多项选择题测试评估知识的变化。干预组在研讨会之前、直接之后和 3 个月后完成了问卷，而候补名单对照组也在研讨会前 3 个月进行了测试，以排除非特异性学习。主要的结果衡量标准是基线和基线后 3 个月的分数差异。该研究在德国临床试验注册处（DRKS00024915）注册。教育研讨会导致知识略有增加，但可以衡量。虽然候补名单对照组在研讨会前的两次测试并未显示出疾病知识的非特异性增加，但干预措施导致了知识的数值增加（平均 ± 标准差评分差异 0.34 ± 1.31，95%CI (-0.23;0.86)，p = 0.26），但未达到统计学意义。多元线性回归分析显示，参加自助小组（β = 1.12；p = 0.03）是疾病知识更高的积极预测指标。尽管受到参与者的高度赞赏，但为期两天的在线研讨会可能不是生成可衡量的疾病特异性知识的最佳形式。参加自助小组是研讨会前疾病特异性知识水平较高的积极预测指标，应推荐给每位受影响的人。
