Stakeholders' perspectives on preventive approaches to rheumatoid arthritis

Background: There is a strong research focus on the identification of individuals at risk of RA, to facilitate preventive interventions. To inform the development of effective predictive and preventive approaches for RA, it is important to gain a thorough understanding of the views of those who may affected by these approaches. Therefore, this thesis aimed to explore stakeholder's perspectives towards predictive and preventive approaches for RA, including RA patients, their first degree relatives (FDRs) and healthcare professionals (HCPs). Method: Due to the limited existing literature within the field of RA, a mixed-methods systematic literature review was conducted to examine the acceptability of predictive testing for ischemic heart disease (IHD) in those with a family history, to gain insights that may be relevant in the context of RA. Two cross-sectional surveys were conducted to assess the views of patients with RA and their FDRs regarding predictive testing. FDRs' surveys assessed their interest in predictive testing, and potential predictors of interest. Patients' surveys assessed their likelihood of communicating RA risk information to their FDRs, and potential predictors of this likelihood. Finally, one-to-one qualitative interviews were conducted on rheumatologists, rheumatology nurse specialists and GPs to assess their views on predictive and preventive approaches. Results: The systematic review examined five quantitative and two qualitative studies. Surveys were completed by 396 FDRs and 482 patients, and interviews were conducted with 16 HCPs. Those with a family history of RA (and IHD) were interested in taking a predictive test for the disease. Patients were willing to communicate information about RA risk to their FDRs, and HCPs were willing to provide predictive and preventive approaches to those at-risk. Several factors influencing stakeholders' perceptions towards these approaches, including the introduction of these approaches, were identified. These included demographic characteristics, perceived risk of developing RA, understanding of prediction and prevention, the need for patient autonomy, and the potential for tests to cause psychological harm. Conclusion: Stakeholders were generally interested in predictive and preventive approaches for RA, and reported various factors influencing their perceptions that could be used to inform the development of effective strategies to support the implementation of such approaches into clinical practice.