5536: Impact of Vasculitis on Employment and Income (VascWork) Study

Status: Closed to Accrual

For Diseases

  • Behçet's disease
  • Central nervous system (CNS) vasculitis
  • Cryoglobulinemic vasculitis
  • Eosinophilic granulomatosis with polyangiitis (Churg-Strauss)
  • Granulomatosis with polyangiitis (Wegener's)
  • IgA vasculitis (Henoch-Shoenlein purpura)
  • Microscopic polyangiitis (MPA)
  • Polyarteritis nodosa (PAN)
  • Takayasu's arteritis (TAK)
  • Urticarial vasculitis

Background

Vasculitis is a group of rare diseases involving inflammation (swelling) of the arteries and other tissues. Although much progress has been made towards finding better medical therapies to treat vasculitis, patients with vasculitis often must manage substantial disease and treatment burdens. Patients with systemic vasculitis may have high rates of work disability and significant loss of personal income from employment. This study will ask questions about:

  • Employment status (Do patients have to take a prolonged sick leave?)
  • Work productivity (How many patients have to adjust their work because of the physical demands of the job?)
  • Income (How many patients have a loss of income following the diagnosis of their disease?)

This study is important because it will provide information about an understudied area in vasculitis, that is the impact of vasculitis on employment and income. It will help researchers examine risk factors for work disability and put emphasis on an often underestimated consequence of vasculitis on patient's quality of life. Therefore, the results of this study may support the continuous need for awareness and research programs on vasculitis.

About this Study

All patients living in the United States or Canada enrolled in the Vasculitis Clinical Research Consortium's (VCRC) Contact Registry will be invited via email to participate in this study. People voluntarily enroll in the VCRC Contact Registry with the understanding that they will receive information about clinical studies for which they might be eligible. The introductory email will include basic information about the study and all of the required elements for informed consent in a brief format. Once participants agree to participate in the study, they will be directed to the online questionnaire.

When completing the questionnaire, the patients will be asked a series of questions about the impact of their disease (vasculitis) on their employment and work capacities. It is expected that most participants will require 15 minutes to complete the questionnaire.

Target Enrollment: 400

To be eligible to participate, you must:

  • Be enrolled in the VCRC Contact Registry
  • Be a patient with a diagnosis of:
    • Behçet's disease
    • Central nervous system (CNS) vasculitis
    • Cryoglobulinemic vasculitis
    • Eosinophilic granulomatosis with polyangiitis (Churg-Strauss)
    • Granulomatosis with polyangiitis (Wegener's)
    • IgA vasculitis (Henoch-Shoenlein purpura)
    • Microscopic polyangiitis (MPA)
    • Polyarteritis nodosa (PAN)
    • Takayasu's arteritis (TAK)
    • Urticarial vasculitis
  • Have been diagnosed with vasculitis more than 1 year ago
  • Be 18 years of age or older
  • Live in the USA or Canada
    • Language requirements: questionnaire will be in English only

You are not eligible to participate if:

  • You are unable to provide informed consent and complete the survey

How do I join the VascWork Study?

You can only join this study through a personalized link. This link has been sent to the email address you provided upon joining the VCRC Contact Registry.

Hear more from the doctor leading this study:

USF IRB Pro00022256