Patients’ and rheumatologists’ perceptions on preventive intervention in rheumatoid arthritis and axial spondyloarthritis

Abstract

Background Individuals at risk of developing rheumatoid arthritis (RA) may benefit from lifestyle or pharmacological interventions aimed at primary prevention. The same may apply to individuals at risk of axial spondyloarthritis (axSpA). Our aim was to investigate and compare the willingness of individuals at risk of RA or axSpA and rheumatologists to initiate preventive intervention. Methods Individuals at risk of RA (arthralgia and anti-citrullinated protein antibodies and/or rheumatoid factor positivity without arthritis (RA-risk cohort; n = 100)), axSpA (first-degree relatives of HLA-B27-positive axSpA patients (SpA-risk cohort; n = 38)), and Dutch rheumatologists (n = 49) completed a survey on preventive intervention which included questions about disease perception, lifestyle intervention, and preventive medication. Results At-risk individuals reported willingness to change median 7 of 13 lifestyle components in the areas of smoking, diet, and exercise. In contrast, 35% of rheumatologists gave lifestyle advice to ≥ 50% of at-risk patients. The willingness to use 100% effective preventive medication without side effects was 53% (RA-risk), 55% (SpA-risk), and 74% (rheumatologists) at 30% disease risk which increased to 69% (RA-risk) and 92% (SpA-risk and rheumatologists) at 70% risk. With minor side effects, willingness was 26%, 29%, and 31% (at 30% risk) versus 40%, 66%, and 76% (at 70% risk), respectively. Conclusions Risk perception and willingness to start preventive intervention were largely similar between individuals at risk of RA and axSpA. Although the willingness to change lifestyle is high among at-risk individuals, most rheumatologists do not advise them to change their lifestyle. In contrast, rheumatologists are more willing than at-risk patients to start preventive medication.

Perceptions and experiences of individuals at-risk of rheumatoid arthritis (RA) knowing about their risk of developing RA and being offered preventive treatment: systematic review and thematic synthesis of qualitative studies

“… 15 This meta-synthesis identified the benefits of predictive testing to motivate lifestyle changes, but also revealed the potential negative emotional impact of testing. In congruence with our synthesis, previous surveys conducted with individuals at-risk of RA 14 42 and spondyloarthropathy 43 highlighted participants’ concerns about preventive medication, particularly with regard to side effects. For example, in one such study, willingness to take preventive medication decreased by approximately half with the possibility of mild side effects.…”

“…For example, in one such study, willingness to take preventive medication decreased by approximately half with the possibility of mild side effects. 43 Synonymous with our review findings, previous studies have also revealed that the decision to engage with preventive interventions depends on the effectiveness of these treatments, 14 42 the opinions of trusted healthcare professionals, 42 individuals’ perceptions of how severe the disease is 43 and when their risk of developing the disease is increased. 14 43 However, in contrast to our findings, one previous study found that mode of drug administration did not influence at-risk individuals’ decisions to take preventive treatment.…”

“… 1 14 This is in contrast to a previous survey involving rheumatologists, where the majority were unlikely to advise lifestyle changes and were more willing than at-risk individuals to start preventive medication, regardless of side effects. 14 …”

“…1 14 This is in contrast to a previous survey involving rheumatologists, where the majority were unlikely to advise lifestyle changes and were more willing than at-risk individuals to start preventive medication, regardless of side effects. 14 The personal burden of living with RA, including illness uncertainty, has been well established. 39 Our review indicated that individuals at-risk of RA may have concerns about predictive testing and finding out their risk status because of this perceived burden.…”

“…4 Research regarding the early diagnosis of RA has resulted in prediction models and international classification criteria, [5][6][7][8][9] and there is an increasing focus on the efficacy of preventive medication in the preclinical phase to prevent or delay the progression of RA. [10][11][12][13][14] However, there is limited insight into how at-risk individuals understand their own risk and on their views regarding predictive testing and engaging with preventive interventions, including lifestyle changes and medication. A metasynthesis of qualitative studies exploring the perceptions of predictive testing for those at-risk of developing a chronic inflammatory disease has previously been conducted.…”