Objective

Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a complex, chronic autoimmune disease, and its diagnosis triggers considerable anxiety and uncertainty for those affected. There are currently no valid data describing the impact of disease-specific patient education on the disease knowledge, subjective impairment, and changes in lifestyle habits related to AAV.

Method

We designed a one-day educational programme to serve AAV patients with information about their disease and its treatment. Patients were randomized into an intervention group and a waiting list control group. Increase in knowledge was measured with 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 was additionally tested 3 months before the seminar to rule out non-specific learning. Furthermore, we investigated the burden of the disease and the impact of our intervention on this burden.

Results

Compared with the control group, the intervention increased the knowledge (mean ± sd score difference 2.2 ± 1.0, 95% confidence interval 0.1–4.3, p = 0.04). From the patients’ point of view, their understanding of the disease had improved and the subjective impairment caused by their rheumatic disease had decreased. There was a tendency to include disease-relevant behaviour, such as nasal care or dietary recommendations, more often in everyday life.

Conclusion

A one-day seminar is suitable to increase the disease-specific knowledge of patients with AAV in a sustainable manner. In addition, our measure positively affected the disease-relevant behaviour.

中文翻译：

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为期一天的结构化研讨会对 ANCA 相关血管炎的疾病特异性知识、生活习惯和疾病损害的影响。随机对照研究的结果

客观的

抗中性粒细胞胞浆抗体 (ANCA) 相关性血管炎 (AAV) 是一种复杂的慢性自身免疫性疾病，其诊断会引发患者相当大的焦虑和不确定性。目前还没有有效的数据描述针对特定疾病的患者教育对 AAV 相关疾病知识、主观损伤和生活习惯改变的影响。

方法

我们设计了一个为期一天的教育计划，为 AAV 患者提供有关其疾病及其治疗的信息。患者被随机分为干预组和等候名单对照组。知识的增加是通过多项选择测试来衡量的。干预组在研讨会前、研讨会后和研讨会后 3 个月完成问卷调查，而等候名单对照组在研讨会前 3 个月进行额外测试，以排除非特定学习。此外，我们调查了疾病的负担以及我们的干预措施对这种负担的影响。

结果

与对照组相比，干预增加了知识（平均 ± 标准差得分差异 2.2 ± 1.0，95% 置信区间 0.1–4.3，p = 0.04）。从患者的角度来看，他们对疾病的认识有所提高，风湿性疾病造成的主观损害有所减少。人们倾向于在日常生活中更频繁地包括与疾病相关的行为，例如鼻部护理或饮食建议。

结论

为期一天的研讨会适合以可持续的方式增加 AAV 患者的疾病特异性知识。此外，我们的措施对与疾病相关的行为产生了积极影响。