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.