LAUSR

To elicit and compare preferences of patients and first-degree relatives and rheumatologists for preventive treatments for rheumatoid arthritis, understand the influence of shared decision-making, and predict the probability of uptake of the preventive treatments currently being studied. An online discrete choice experiment was completed by patients and their first-degree relatives and rheumatologists. Results were analysed using mixed logit model to estimate preferences for the key features of treatments. Preferences for features of treatments were used to predict the probability of uptake of seven preventive treatment options. A total of 108 potential recipients (78 patients and 30 of their first-degree relatives) and 39 rheumatologists completed the survey. Preferences of patients/first-degree relatives and rheumatologists were similar (shared decision-making was most important, followed by the risk of side effects and potential benefit), but subtle differences existed; rheumatologists placed greater importance on certainty in evidence than patients/first-degree relatives, who felt that how a treatment was taken was more important. Predicted uptake suggested that 38% (95% CI 19%, 58%) of patients/first-degree relatives would not take a preventive treatment, compared with 12% (95% CI − 4%, 27%) of rheumatologists. A consistent finding across all groups was a preference for non-biologic disease-modifying anti-rheumatic drugs. Only relatively safe options for preventive treatment are likely to be acceptable to at-risk populations. This study of preventive treatments highlights that the preferences of physicians and recipients of treatment should take a central role in the design of clinical studies as well as in decisions to initiate treatments. Key Points • This paper is the first to compare preferences for preventive treatments between rheumatologists and patients and at-risk individuals. • The results of this study indicate that patients and at-risk individuals, as well as rheumatologists, are likely to prefer the safest options as preventive treatment, even if the potential benefit of these is lower. • Although preferences of patients and at-risk individuals are similar to those of rheumatologists, the choice of preventive treatment may differ between groups; this is important as shared decision-making was a critical factor in treatment decision-making. • Preferences of physicians and recipients of treatment should take a central role in the design of clinical studies as well as in decisions to initiate treatments. Key Points • This paper is the first to compare preferences for preventive treatments between rheumatologists and patients and at-risk individuals. • The results of this study indicate that patients and at-risk individuals, as well as rheumatologists, are likely to prefer the safest options as preventive treatment, even if the potential benefit of these is lower. • Although preferences of patients and at-risk individuals are similar to those of rheumatologists, the choice of preventive treatment may differ between groups; this is important as shared decision-making was a critical factor in treatment decision-making. • Preferences of physicians and recipients of treatment should take a central role in the design of clinical studies as well as in decisions to initiate treatments.