Individuals at risk of RA or axSpA state that they are highly willing to make lifestyle changes, while most rheumatologists do not advise at-risk patients to do so, mostly due to a current lack of evidence. In contrast, rheumatologists are more willing to prescribe preventive medication than at-risk individuals are to use it. The willingness to use preventive medication of individuals at risk of RA or axSpA is similar at a lower disease risk (30%) while at a high risk (70%), individuals at risk of axSpA are more willing to use medication. Overall, willingness is higher in men (RA-risk), older persons (SpA-risk), those who consider the disease to be serious (RA-risk), and in persons who are preoccupied with developing the disease (SpA-risk). A decrease in disease risk and the expected occurrence of side effects significantly decreases willingness to use medication. Disease risk perception, ethical views on cohort participation, and willingness to change lifestyle to decrease disease risk are similar between individuals at risk of RA or axSpA.
The previously reported high willingness of FDRs of RA patients to change their lifestyle [13,14,15] is also observed in the present at-risk populations. The willingness to use preventive medication seems higher in symptomatic RA-risk individuals compared to asymptomatic FDRs. Finckh et al. reported that 38% of FDRs would be willing to use preventive medication at a 40% disease risk [13]. Compared to a 53% willingness of symptomatic at risk individuals at a 30% disease risk, this supports the rationale from qualitative studies that the presence of symptoms would increase willingness to use preventive medication [18]. The willingness to start preventive medication in the current group of SpA-risk individuals is comparable to the group that was included in the study of de Winter et al. [21], validating these results.
In case of a clearly increased disease risk, individuals at risk of axSpA may be more willing to use medication than individuals at risk of RA. This might be explained by the fact that the SpA-risk population is significantly younger and axSpA starts at a younger age, making the dilemma between disease risk without intervention and possible overtreatment more urgent. However, qualitative research is needed to determine the underlying motives. In both groups, potential side effects played an important role in the decision to start preventive medication, which confirms previous research reporting a large effect of expected mild side effects on decision-making, even if these would cease after stopping the medication [15]. Conversely, worries about disease development and severity increased preventive intervention willingness in both groups. VAS pain showed no association with intervention willingness, which might be explained by the fact that in individuals at risk of RA, symptoms usually fluctuate [24] and in the SpA-risk cohort, the overall VAS pain was low (median 14, IQR 0–36). It is important to note that, in contrast to the scenarios presented in the questionnaire, in reality, the risk of disease development is lower in SpA-risk individuals than in RA-risk individuals and this will affect individuals’ willingness to initiate preventive intervention in clinical practice [25].
A minority of rheumatologists sometimes advises individuals at risk of RA to stop smoking and lose weight, but the majority requires more evidence as to whether lifestyle changes reduce the risk of developing RA before implementing lifestyle advice into daily practice. Indeed, while some environmental risk factors have been identified, it has not yet been fully clarified how most of these influence autoimmunity [26] and how changing these factors affect RA-risk. To address this, we are currently performing a randomized controlled trial investigating the effects of a lifestyle intervention program on disease risk in individuals with (an increased risk of) RA. Furthermore, rheumatologists were more willing to prescribe preventive medication than individuals at risk of RA were willing to use medication. This is an important finding since the manner in which benefits and risks of treatment are presented to at-risk individuals influences health decisions and a positive attitude of the rheumatologist may encourage at risk individuals to decide for intervention [17]. However, minor side effects did not affect the rheumatologists’ decision to start medication, while it is a significant concern for at risk individuals. Therefore, despite their low levels of concern, rheumatologists should address at-risk persons’ worries about side effects and provide balanced education on potential side effects of preventive therapy in relation to personal disease risk.
A strength of this study is that it is the first study on preventive intervention willingness in a large group of symptomatic individuals at risk of RA. Furthermore, a comparison could be made with individuals at risk of axSpA and rheumatologists.
A limitation of our study is the possible channeling bias. Ethical views on cohort participation could be answered differently compared to those who chose to not participate in the study cohort. Also, the people who completed the questionnaire might be more inclined to start preventive treatment because they are more interested in the subject than those who did not complete the questionnaire; however, the overall response rate of at-risk individuals was high. Conversely, the response rate of rheumatologists was low, and it is uncertain whether these results are representative for Dutch rheumatologists. Additionally, the relatively low number of SpA-risk individuals compared to RA-risk individuals is considered a limitation of the current study. Furthermore, to create a clear and still practical survey, a limited number of questions were chosen per subject. Nevertheless, these give a good impression of ethical views regarding cohort participation, the overall willingness to start preventive intervention and important decision-making factors in at-risk individuals.
In summary, these results support the need for studies on the effect of lifestyle changes on disease risk. In addition, to facilitate future prevention trials using medication, we suggest research into optimal education of at-risk individuals about interpreting potential side effects of medication in relation to personal disease risk. Future trials should aim to include individuals who were recently informed about their personal risk, calculated using the currently available prediction tools, thereby closely resembling clinical practice.