Background/Purpose: Work disability associated with rheumatic diseases accounts for an important part of the costs of these conditions. Few studies have investigated disability among patients with vasculitis and most such research was conducted before 2005 and focused on granulomatosis with polyangiitis (GPA). The purpose of this study (VascWork) was to learn about the impact of vasculitis on employment and income in patients with systemic vasculitides.

Methods: Patients enrolled in the Vasculitis Clinical Research Consortium Patient Contact Registry, living in the USA or Canada, and followed for more than 1 year since their vasculitis was diagnosed were invited via email to participate in an on-line survey-based study. Participants were asked about their disease, their employment and work status, and the financial impact of their vasculitis on their lives.

Results: Between June and December, 2015, 421 patients completed the survey: 205 with GPA, 67 with eosinophilic granulomatosis with polyangiitis, 33 with microscopic polyangiitis, 27 with Takayasu arteritis, 27 with Behçet’s disease and 62 with other forms of vasculitis. 125 (30%) patients were male; mean age 54.5±13 years; 92% Caucasian; 354 (84%) living in USA. Compared to patients who continued to work after a diagnosis of vasculitis, patients who stopped working or retired early because of their vasculitis (N=111) were older (56±11 vs. 53±11 years, p=0.036) and, accounting for sex and age, were less likely to have health insurance (OR=0.36; 95% CI: 0.15–0.9) and less likely to have attained education beyond high school (OR=0.51; 95% CI: 0.26–0.99). Figure 1 summarizes the work status of patients at time of diagnosis and at last follow-up (mean of 9±6.5 years).

Figure 1. Work status of patients at time of diagnosis and at last follow-up. 76 patients reported income loss with an average (range) loss of 45% (2-95%). 253 patients (61%) reported having paid for some of their medications or investigations for vasculitis, leading 32 patients to not receive some prescribed treatment or testing because they could not afford the costs. Patients who were unable to pay for treatments had more often become unable to work (OR=3.12; 95% CI: 1.14–8.52).

Conclusion: This study using patient self-reported data demonstrates substantial limitations in work, productivity, and net personal income loss that patients accrue due to vasculitis. These burdens of disease are additive to the effects of vasculitis on physical functioning and directly negatively impact patients’ healthcare and overall quality of life.