Perceptions about predictive testing in those at risk
Research type
Research Study
Full title
Willingness to undergo predictive testing and perceptions of risk in people at risk of developing inflammatory arthritis: A qualitative exploration
IRAS ID
137009
Contact name
Rebecca Stack
Contact email
Sponsor organisation
University of Birmingham
Research summary
Rheumatoid arthritis (RA) is a chronic autoimmune condition affecting approximately 1% of the population. The early recognition of RA is vital; irreversible joint damage occurs during the early stages of disease, and there is a therapeutic window during which drug treatment is particularly effective.
Research studies, such as the EUROteam project, are focused on the development of predictive tests which can predict the transition from health to chronic illness; particularly forms inflammatory arthritis including RA. The availability of these tests is increasing, and patients are becoming increasingly exposed to genetic tests, biopsies and auto-antibody tests.
People most at risk of developing RA are the first degree relatives of people with RA and people with arthralgia. These groups can now be exposed to genetic tests and auto-antibody tests, therefore, it is important to explore how acceptable these testing procedures are to people at risk and how people assess their personal risk and susceptibility to developing RA in the future.
Biopsies are not routinely used in people at risk (although in the future the predictive value of biopsies may justify their routine use), however, biopsies are routinely used to assess risk in primary Sjogren’s Syndrome (pSS - another form of inflammatory arthritis). Therefore, people with pSS will be interviewed to explore their perceptions of undergoing biopsies and understand their perceptions about being at risk and acceptable to complication and co-morbid conditions.
This research aims to explore how people at risk feel about being labelled as an “at risk” person, their perceptions of risk and their thoughts about the use of predictive tests. Using qualitative method a theoretical framework aimed at understanding of the information needs that patients have when making decisions to undergo predictive testing and the information patients need to have to fully understand risk will be developed.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
13/YH/0329
Date of REC Opinion
11 Oct 2013
REC opinion
Further Information Favourable Opinion