Vasculitis Clinical Trial
Official title:
The ANCA Vasculitis Questionnaire (AAV-PRO©)
The aim of this project is to develop a disease specific patient reported outcome measure (PROM) for patients with AAV (the AAV-PRO). Investigators are developing and validating a questionnaire to assess quality of life in patients with ANCA-associated vasculitis (AAV). Patients with AAV have inflammation in the small blood vessels leading to involvement of a range of organs and can suffer from ongoing disease activity or treatment side effects. Quality of life can be measured by patient reported outcome measures (PROMs).
Patients with ANCA-associated vasculitis have inflammation in the small vessels that impact
a range of organs and Investigators understand that patients may suffer ongoing disease
activity, as well as side effects from the treatments. Assessing patients quality of life
can be an important tool for conducting clinical trials for new treatments and medications.
Quality of life can be measured by questionnaires called "patient reported outcome measures"
(PROM). What is a patient-reported outcome? Patient-reported outcomes, or PROs, are
patients' feedback on what they are feeling or what they are able to do as participants are
dealing with a chronic disease . Patient-reported outcomes are important because they
provide doctors and researchers information about patients' quality of life. Questionnaires
can be designed to measure specific PROs that are of specific importance to a disease and
can provide much needed information on evaluating the effectiveness of health care. The aim
of this survey is to develop a disease specific patient reported outcome measure, or PROM,
for patients with AAV.
A small group of Investigators and Patient-Partners developed this survey for people with
ANCA-associated vasculitis (the AAV-PRO). Investigators will invite patients with AAV to
complete the questionnaire they have designed, called the AAV-PRO. By analysing how people
fill in the questionnaire, Investigators will be able to find out how well the questions
work, and whether they need to ask all of them.
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