The impact of a structured one-day seminar on disease-specific knowledge, lifestyle habits and disease impairment in ANCA-associated vasculitis. Results of a randomized, controlled study.

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.