Objectives We investigated the incidence and potential underlying risk factors of venous thromboembolism (VTE) in patients with anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV). We assessed haemostatic disturbances and factors that may contribute to the risk of VTE development. Methods ANCA-positive AAV patients (n = 187) were included. Previously identified risk factors for VTE and current medication were retrieved from medical records. We assessed haemostasis using different methods: endogenous thrombin potential (ETP), overall haemostatic potential (OHP), overall coagulation potential (OCP) and overall fibrinolysis potential (OFP) in patients with active AAV (n = 19), inactive AAV (n = 15) and healthy controls (n = 15). Results Twenty-eight VTEs occurred in 24 patients over a total follow-up time of 1020 person-years. A majority of VTEs occurred within the first year after diagnosis. High age (p < 0.01), ongoing prednisolone treatment and recent rituximab administration were more common in the VTE group (p < 0.05 for all). ETP and OHP were significantly increased and OFP significantly decreased in plasma from active compared with inactive AAV-patients (p < 0.05, p < 0.01 and p < 0.05, respectively) and healthy controls (p < 0.001). We could not confirm previously reported risk factors for VTE development. Conclusions A high prevalence of VTE in AAV-patients was seen within the first year after diagnosis, suggesting that disease activity contribute to VTE development. High age and concurrent treatment should also be taken in account when estimating VTE risk. The results also indicate disturbances in the haemostatic balance towards pro-thrombotic condition in AAV patients, where ETP and OHP may be useful markers for identifying patients at high risk.

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Objectives Knowledge and health literacy enable patients to monitor symptoms and disease impact. Educational needs have previously been explored in rheumatology, but scarcely for patients with antineutrophilic cytoplasmatic antibody (ANCA)-associated vasculitis (AAV). The aim of the study was to assess the educational needs among patients with AAV using the Educational Needs Assessment Tool (ENAT). Methods A cross-sectional observational study included adults with AVV. Educational needs were captured by ENAT. Total ENAT (0–117 points, higher numbers indicating higher educational need) and the seven domains (managing pain, movement, feelings, disease process, treatment, self-management and, support systems) were explored regarding sex, age, education, diagnosis, disease duration and disease activity. To compare domains a percentage response (0–100%) was calculated. Results Individuals (n = 178), men 50%, 34% with disease duration ≤2 years were included. The total ENAT mean was 66.5 ± 26.6 (57%) and domains; ‘Disease process’ 78%, ‘Self-management’ 69%, ‘Treatments’ 64%, ‘Feelings’ 56%, ‘Managing pain’ 48%, ‘Support systems’ 47% and ‘Movement’ 41%. Higher educational needs were found among women in the domains ‘Movement’, ‘Feelings’, ‘Disease process’ and in total ENAT (all p < 0.04) compared with men. Higher educational needs were also seen in patients with disease duration ≤ 2 years regarding ‘Disease process’, ‘Self-management’, ‘Support systems’ and in total ENAT compared with patients with longer disease duration (all p < 0.03). Conclusion This study revealed great educational needs among AVV. Some groups express higher needs (women and those with shorter disease duration). Increased education for patients with AAV may lead to improved self-care and treatment adherence.