5534: Educational Needs of Patients with Systemic Vasculitis - an international survey

Status: Closed to Accrual

For Diseases

Behçets disease, Churg-Strauss Syndrome, CNS Vasculitis, Drug-induced Vasculitis, Giant Cell (Temporal) Arteritis, Granulomatosis with Polyangiitis (Wegener’s granulomatosis), Henoch-Schöenlein Purpura, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Takayasu’s Arteritis

Background

Vasculitis is a rare condition causing inflammation of blood vessels. The conditions are chronic and require long term treatment with drugs to suppress inflammation and which have side effects. Very little is known about the educational needs of patients with vasculitis. The aim of this study is explore the educational needs of patients with vasculitis to improve the quality of educational material provided to them. We have already conducted a similar study in the UK.

The research questions are:

  1. What is the important information needed by vasculitis patients?
  2. What is the preferred means of delivering patient education to vasculitis patients?
  3. Is there a difference in the educational requirements of international non-UK patients compared with UK patients?

About this Study

This is an online questionnaire survey. Participants will complete a single survey taking 10-15 minutes. We hope to enroll 3000 participants with vasculitis. Patients with any type of vasculitis may enroll. You will be asked to evaluate the importance of types of educational and informational material.

Target Enrollment:

To be eligible to participate, you must:

  • Be an individual with one of the following:
    • Behçets disease
    • Churg-Strauss Syndrome
    • CNS Vasculitis
    • Giant Cell (Temporal) Arteritis
    • Granulomatosis with polyangiitis (Wegener’s granulomatosis)
    • Henoch-Schöenlein Purpura
    • Microscopic Polyangiitis
    • Polyarteritis Nodosa
    • Takayasu’s Arteritis
  • Be 18 years of age or older
  • Be English speaking

You are not eligible to participate if:

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

If you have any questions about this study, please contact rdnwebmaster@epi.usf.edu