Patient perceptions of complex risk-benefit decisions in RA
Research type
Research Study
Full title
Patient engagement and complex treatment decisions in RA-what do patients need to know and how do we tell them?
IRAS ID
128594
Contact name
Ian Gaywood
Contact email
Sponsor organisation
Nottingham University Hospitals NHS Trust
Duration of Study in the UK
0 years, 6 months, days
Research summary
Treatment regimes for rheumatoid arthritis have become more aggressive in recent years with the increasing use of immunosuppressive drug combinations and the development of potent biologic therapies. The benefits of this approach are balanced by greater risks of adverse events. Faced with decisions on the risks and benefits of treatment, patients will sometimes make decisions which are not in their best interests. While they have the right to do this it should never happen because they have been provided with inadequate or poorly presented information. There is a small amount of evidence available on risk-taking behaviours and treatment decisions by patients with RA but most of this predates the era of aggressive intervention and none of it has used patient opinion to identify themes relevant to them. It is clear from studies so far that patients’ treatment decisions can be illogical and objectively unsound. It is also clear that decisions are influenced by the ways in which information is presented.
This study will use a focus group methodology to examine the complex and subtle phenomena being considered here including patients' understanding of their condition, understanding of treatment, assessment of treatment risk, assessment of information needs, and perspectives of the patient/clinician relationship. The findings will then be used to design a larger study to design better patient information sources. This application applies only to the preliminary part of this programme.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
14/YH/1229
Date of REC Opinion
27 Oct 2014
REC opinion
Favourable Opinion