To assess patients' self-estimates of the burden of disease in vasculitis and to compare data across patient populations from the US, Germany, and the UK. Outcome assessment in vasculitis primarily focuses on physician evaluations of disease activity and damage. Little is known about the patients' perspectives regarding the burden of disease.
Patients ranked (scale 0–5) a list of vasculitis-related items to estimate a combination of pain, interference with daily function, discomfort and/or annoyance, anxiety/psychological impact, and medical importance. Patients were also asked to list the 5 most troublesome aspects of the disease.
Data from 264 patients with vasculitis from 3 countries were collected. Wegener's granulomatosis was the predominant disease, comprising 63% of the cohort. Diagnoses were confirmed by physicians in 98% of cases. The most common item from the free-text sections was fatigue (75%), followed by pain (31%), musculoskeletal symptoms (24%), difficulty breathing (19%), financial aspects (13%), nasal discharge/crusting (14%), and weight gain (10%). Rankings of individual items varied substantially: fatigue (3.5), loss of energy (3.4), weight gain (3.1), joint pain (3.0), and sinusitis (3.0) were the highest-ranked symptoms among those manifestations experienced by at least 50% of patients. Several severe manifestations (e.g., dialysis, seizures, oxygen dependency) were ranked lower (<3.0).
Fatigue and reduced energy level are considered the most important disease burdens by patients with vasculitis; manifestations associated with organ damage were rated lower. The patients' perspectives of the impact of vasculitis differ from the physicians' ratings. Future outcome assessment in vasculitis should include the patients' perspectives.