Background/Purpose: Patient-held beliefs about their illness are central for understanding patient reactions to specific diseases. This study aimed to compare illness perceptions, defined as the organized cognitive beliefs patients hold about disease, among different forms of vasculitis and to identify risk factors for negative illness perceptions.

Methods: Participants were recruited from an online registry in vasculitis to complete the revised Illness Perception Questionnaire (IPQ-R) which measures dimensions of illness perception. High scores on the identity, timeline, cyclical, consequences, and emotional representations dimensions represent strongly held beliefs about the number of symptoms attributed to illness, the chronicity and cyclical nature of the condition, the negative consequences of illness, and the negative emotional impact of disease. High scores on the personal control, treatment control and illness coherence dimensions represent positive beliefs about the controllability of the illness and personal understanding of the condition. Mean scores in IPQ-R dimensions were compared across types of vasculitis where n>30 and to literature-reported IPQ-R scores in diabetes mellitus, hypertension, and osteoarthritis using ANOVA with post-hoc Scheffe tests. Cluster analysis of IPQ-R scores was used to identify a group with negative illness perceptions, and stepwise regression was used to identify clinical variables (age, sex, race, ethnicity, place of birth, education, income, depression) and disease characteristics (activity status, severity, duration, overall health) associated with negative illness perception.

Results: 692 participants with 9 forms of vasculitis completed the IPQ-R. For 6 dimensions, there were no significant differences in mean IPQ-R scores between the different vasculitides.  Scores in identity and cyclical dimensions were significantly higher in Behçet’s disease compared to other types of vasculitis (13.5 vs 10.7; 4.0 vs 3.2, p<0.05). Compared to other chronic diseases, patients with vasculitis perceived greater negative disease impact on function and emotional well-being (Table). Younger age (OR=1.04; 95%CI 1.02-1.06), depression (OR=4.94; 95%CI 2.90-8.41), active disease status (OR=2.05; 95%CI 1.27-3.29), and poor overall health (OR=3.92; 95%CI 0.88-17.56) were significantly associated with negative illness perception.

Conclusion: Patients with vasculitis have a unique set of illness perceptions. Clinicians should be aware that younger age, a history of depression, active disease status, and poor overall health are risk factors for negative illness perceptions in systemic vasculitis. Given the similarities in illness perceptions across the vasculitides, ongoing efforts to derive patient-reported outcome measures in vasculitis should focus on measures that are universally applied to different types of vasculitis.