Patient Reported Outcomes in ANCA associated Vasculitis
Research type
Research Study
Full title
Patient Reported Outcomes in Anti-Neutrophil Cytoplasmic Antibodies Associated Vasculitis
IRAS ID
319645
Contact name
Lauren Floyd
Contact email
Sponsor organisation
Centre for Health Research and Innovation
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
ANCA associated vasculitis is a term used to describe a rare group of disorders in which there is damage targeted at blood vessels. Multiple organs are often involved and the kidney is one of the worst affected. Vasculitis is a chronic condition that can get better and then worse again over time. It often requires intensive management in the form of treatment to suppress the immune system which can include weak chemotherapy agents as well as high dose steroids.
In this study we aim to look at the impact of ANCA associated vasculitis on patients’ quality of life. We are interested in understanding how patients experience their disease and what aspects of their life it affects as well as incorporating the impact of the treatment they receive as well. This will allow clinicians to better understand the perception and burden of illness that patients experience and allow for more shared decision making to improve overall outcomes.
This study will consist of three phases, the first is us understanding the current literature and what tools are already available to assess vasculitis and patients quality of life. The second phase is to carry out workshops and interviews with patients living with ANCA associated vasculitis, to understand the key themes and issues important to them as well as limitations of the tools already available and how we can improve on them. Finally in the third phase we will design a tool that incorporates all the feedback and suggestions, which we will then apply to a larger group of vasculitis patients. We aim to produce a tool that can be incorporated into the clinical practice and encourage positive change as well as shared decision between patients and clinicians. We feel believe this research will lead to improvements in clinical outcomes.
REC name
London - Bromley Research Ethics Committee
REC reference
23/PR/0013
Date of REC Opinion
14 Mar 2023
REC opinion
Further Information Favourable Opinion