ANCA-Associated Vasculitis (AAV), Churg-Strauss Syndrome (CSS), Eosinophilic Granulomatosis With Polyangiitis (Churg-Strauss) (EGPA), Granulomatosis With Polyangiitis (Wegener's) (GPA), Microscopic Polyangiitis (MPA), Vasculitis, Wegener Granulomatosis (WG)
Conditions
Brief summary
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).
Detailed description
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.
Interventions
OTHEROnline questionnaire
Sponsors
University of Oxford
University of South Florida
University of Pennsylvania
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
FEMALE
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Registered in the Vasculitis Patient-Powered Research Network (V-PPRN) * Patients greater than 18 years of age * Diagnosis of ANCA-associated vasculitis including: Eosinophilic Granulomatosis with Polyangiitis (also called Churg-Strauss Syndrome), Granulomatosis with Polyangiitis (also called Wegener's granulomatosis or GPA), Microscopic Polyangiitis (MPA)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Completion of AAV-PRO questionnaire. | 6 months | Analysis of how people fill in the questionnaire to determine if these specific questions work, and whether we need to ask all of them. |
Countries
United States
Outcome results
None listed