The aim of this project was to develop a disease specific quality of life survey for patients with ANCA-associated vasculitis. We know that patients with ANCA-Associated Vasculitis (AAV) have inflammation in the small blood vessels leading to involvement of a range of organs. Patients can also often suffer from ongoing disease activity or treatment side effects.
Quality of life can be measured by questionnaires called patient-reported outcome measures (PROMs), and this is considered an important outcome for clinical trials of new medications.
The first stage of the study involved in-depth interviews with patients about the impact of vasculitis on their quality of life; this information was then used to develop questionnaire items. The next stage was a large-scale survey of people with AAV to look at how the questionnaire works and its measurement properties.
273 PATIENTS PARTICIPATED!
With the participation of these patients, we will be able to develop this quality of life survey and improve future clinical trials.
Thank you to all those who participated in this study and made this research possible!
The V-PPRN is dedicated to the principle of sharing study results with participants, other patients, investigators, health systems, and stakeholders in a timely fashion after completion of research. We keep in mind the requirements for scientific publication which may have restrictions about sharing research findings before publication. We look forward to sharing the results as they become available.
Are there any potential benefits to taking part?
There are no direct benefits to individual participants, but you will be increasing what we know about vasculitis which may be of benefit to future patients.
Are there any potential risks in taking part?
There is potentially a risk that thinking about your condition may be upsetting. There is no obligation for you to complete any questions if you find them distressing and you do not have to complete the questionnaire.
What happens to the research data provided?
If you decide to take part you will be given a unique study number; this will be used to collate your data anonymously and confidentially and ensure that only non- identifiable data is transferred to the University of Oxford from the V-PPRN. Contact details and other personal data will therefore remain with the V-PPRN on their confidential contact database. The University of Oxford will then collate and analyse the anonymised data.
Will the research be published?
The research will be published in peer reviewed journals, at conferences and in newsletters and on the V-PPRN, the Vasculitis UK patient, and Vasculitis Foundation websites.
Who has reviewed this project?
This project has been reviewed by, and received ethics clearance through, the University of Oxford Central University Research Ethics Committee. The V-PPRN has ethics approval through the University of South Florida IRB. The project has also been reviewed by patients and researchers from the V-PPRN and Vasculitis UK.
University of Oxford Ethics Board CUREC ethics: MS-IDREC-C1-2015-087