Background Ongoing randomized controlled trials are looking at the efficacy of preventing RA through treatment with anti-rheumatic medications. However even if these trials are successful, uncertainty around the potential benefits of preventative programs in practice will affect the uptake of a preventative treatment program. The views of rheumatologists, patients with RA and people considered at-risk of RA (potential recipients) will be important to consider.
Objectives To identify relevant attributes for a discrete choice experiment (DCE) representing the factors that influence the preferences of patients, first-degree relatives (FDRs), and rheumatologists about preventative treatment for rheumatoid arthritis (RA).
Methods Semi-structured focus groups were conducted with 1) RA patients in British Columbia (BC), Canada 2) FDRs of people with RA, and 3) rheumatologists from across Canada. Participants were recruited through a combination of convenience and homogenous sampling. Focus group guides were adapted from a previous study which used a DCE to represent an RA treatment decision. In the first round of focus groups, moderated discussions with RA patients, FDRs, and rheumatologists elicited open-ended responses to the interview guide questions. Findings from analysis of these discussions were reduced to a list of potential attributes for the DCE. In the second round, RA patients and FDRs provided feedback to improve the validity and representation of the potential attributes. All focus groups were audio recorded, transcribed, and analyzed using Framework Analysis.
Results Five focus groups were conducted with 13 RA patients, 5 FDRs, and 7 rheumatologists from four Canadian provinces. Analysis of the discussions revealed that all groups considered competing risks when considering a preventative treatment decision: risks of developing RA and when it might occur; accuracy of predictive tests and the risk of a false positive; and the risks of treatment itself. For rheumatologists, the empirical evidence supporting preventative tests and preventative treatments for RA, as well as treatment side effects were of significant importance. Interestingly, some rheumatologists did not consider prevention to be part of their role. FDRs frequently mentioned the impact that a preventive treatment would have on their lifestyle, the accuracy of predictive test, and weighing the potential benefits against side effects of treatment as key factors in decisions to take a preventative treatment. The health care provider's (nurse/family physician/rheumatologist) knowledge of RA and perceived trustworthiness was also important to FDRs in considering a heath care provider's recommendation for preventative treatment.
Conclusions Our Framework Analysis highlighted key themes in this discussion which informed the attributes to be included in a DCE. Our findings suggest there are important differences in how patients, FDRs and rheumatologists value the uncertainties surrounding the potential benefits of a preventative treatment for RA.
Acknowledgements This work was supported by a grant from the Canadian Rheumatology Association through the Canadian Initiative for Outcomes in Rheumatology Care (CIORA).
Disclosure of Interest None declared