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

Abstract

ObjectivesThere is increasing interest in identifying individuals at-risk of rheumatoid arthritis (RA) and initiating early treatment to prevent or delay the onset of arthritis. We aimed to describe the perceptions and experiences of at-risk individuals and to inform the conduct of clinical trials and studies, and clinical practice.MethodsA systematic review and thematic synthesis of qualitative studies was conducted. Two review authors independently screened studies for inclusion, appraised their methodological quality using the Critical Appraisal Skills Programme checklist and assessed confidence in the findings using the Grading of Recommendations Assessment, Development and Evaluation–Confidence in Evidence from Reviews of Qualitative Research approach.ResultsSeven studies involving 115 individuals at-risk of developing RA were included. Three major themes (seven subthemes) were identified: understanding the risk of developing RA (knowledge of RA and identification of potential risk factors); preventive interventions to reduce the risk of developing RA (understanding the value and role of preventive interventions, and engagement with preventive interventions); and perceptions of predictive testing for RA (benefits of predictive testing, decision to undertake predictive testing and concerns about predictive testing). Moderate confidence in most review findings was evident.ConclusionWhile there are clear benefits in informing individuals at-risk of RA about their risk following predictive testing and offering preventive treatment, there are potential barriers to engagement, intensified by the burden of uncertainty. Identification of the optimum approaches for presenting risk information, including the risks and benefits of engaging with preventive interventions, is urgently needed to support individuals at-risk of RA in their decision making.PROSPERO registration numberCRD42021236034.

Acceptable risks of treatments to prevent rheumatoid arthritis among first-degree relatives: demographic and psychological predictors of risk tolerance

“…Preventive behavioural/lifestyle interventions are also likely to be effective and may be preferred by patients. 13 The efficacy of lifestyle approaches to reduce the risk of RA development in at-risk groups and patient preferences for such an approach are important topics for further study. 47 …”

Preferences for preventive treatments for rheumatoid arthritis: discrete choice survey in the UK, Germany and Romania

“…Combined behavioural and pharmacological strategies may be effective in future clinical applications [ 43 ]. There is also converging evidence across qualitative studies that lifestyle interventions would be preferred over preventive drug therapies [ 20 ]. The efficacy of lifestyle approaches to prevent RA development [ 44 ] and preferences for such interventions are therefore important areas for future studies.…”

“…Among those at risk for RA, there is uncertainty regarding not only treatment effectiveness and safety, but also the individual’s risk of developing RA, the timeline for that risk and the severity of disease if RA does develop [ 19 ]. Qualitative studies have explored stakeholder perceptions of preventive treatment for RA [ 20 ]. A survey of individuals with arthralgia and autoantibody positivity found that 40% reported a willingness to accept preventive treatments that were 100% effective with minor side effects of immune suppression if their risk of developing RA was 70% [ 21 ].…”

Perspectives of at-Risk Individuals on Preventive Intervention for Rheumatoid Arthritis: A Mini Review

“…Perceptions of predictive approaches have been studied in those with CSA (43,48), asymptomatic individuals who have tested positive for RArelated autoantibodies (48), FDRs (44), the general public (49), and RA patients (who may be involved in providing access and/ or information to FDRs) (45). Participants across these studies recognized the value of disease risk information in terms of increased self-awareness and also the potential for early or preventive treatment (15). However, several studies noted concerns around the uncertainty associated with disease development and potential for psychological distress (44,45,48).…”

“…EULAR guidance for trials and observational studies in individuals at-risk of RA, based on expert consensus and evidence from systematic reviews (14,15), is now available and the scene is set for progress towards a new paradigm of prevention, rather than treatment of RA (16). Evaluation of candidate preventive therapies for RA is a nascent research area, though early findings are promising.…”