A Patient Survey

Thank you for considering taking part in this survey. The survey is focused on finding out how patients with vasculitis feel about the treatments they may be offered.

OPTIONS Vasculitis is being organized by researchers and patients from Canada, Switzerland, the United Kingdom, and the United States. We are trying to understand how patients with ANCA associated vasculitis (sometimes called granulomatosis with polyangiitis [GPA], Wegener’s granulomatosis, or microscopic polyangiitis [MPA]) make decisions about treatments they might be offered.

Patients from around the world with vasculitis and patients with other kidney diseases are participating in OPTIONS Vasculitis. OPTIONS Vasculitis can only be completed online. Participating in OPTIONS Vasculitis is completely voluntary.

If you are eligible and agree to complete this survey, you will first answer a few questions about yourself and your past medical treatment.

In the next part of the survey, you will be asked to imagine that you have just been diagnosed with ANCA associated vasculitis and that your doctor is explaining the potential harms and benefits of a treatment called plasma exchange. After the explanation, you will decide whether you would choose plasma exchange or not.

After you answer, you will be given the same imaginary scenario but with the harms and benefits changed slightly. You will then, once again, be asked whether you would choose plasma exchange or not again.

There are five imaginary scenarios in total.

The survey takes about 15 minutes to complete.

Your answers will be used anonymously to help researchers and health care providers understand how patients make choices about treatments. No one will be able to identify you from your answers. Because the survey is anonymous, once you submit your answers, we cannot change or remove them. By completing this survey, your consent to participate is implied. 

Only the study researchers have access to the data on SurveyMonkey, a platform which has high standards for security. Data is encrypted in transit and will not be disclosed to any third parties. All personal health information is confidential and private.  

OPTIONS Vasculitis was reviewed and approved by the Hamilton Integrated Research Ethics Board, REB #2170. If you have any questions about the survey, you can email us at optionsvasculitis@gmail.com or call 204-632-3664.

Sincerely,

Dr. David Collister,  Mark Farrar, Lesha Farrar, Paul Brown, Michelle Booth, Tracy Firth, Dr. Alfred Mahr, Dr. Mark Little, Dr. Reem Mustafa, Dr. Lynn Fussner, Dr. Alexa Meara, Dr. Gordon Guyatt, Dr. David Jayne, Dr. Peter Merkel, Dr. Michael Walsh

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* 1. I am interested in participating in this study.

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* 2. I understand and agree that my answers will be used anonymously for research purposes only.

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