Background/Purpose: People at risk of developing rheumatoid arthritis (RA) may be candidates for interventions aimed at preventing RA development [1]. The identification of such at risk populations includes testing for genetic and other (e.g. autoantibody) biomarkers. However, little is known about the perspectives of at risk individuals on these tests, how they react and cope when identified as having an elevated risk status and what support they need. This study was undertaken to address this gap in the current knowledge.

Methods: A qualitative interview study with people who were informed of being at risk of developing RA was conducted. People either took part in a predictive test for RA as part of an extended health examination, or were patients with clinically suspect arthralgia. The interview schedule explored perceptions of RA risk and different types of predictive tests. All interviews were audio-recorded, transcribed verbatim and analyzed using thematic analysis.

Results: A total of 34 individuals (rheumatoid factor and/or ACPA positive) from three different European countries, who previously had been informed that they had an elevated risk of developing RA participated in the study. Analysis of the interview data revealed five overarching themes related to predictive testing in the context of RA (Figure).

There were differences between the perceptions of arthralgia patients and asymptomatic individuals. People suffering from pain were much more frightened and worried when informed of being at risk of developing RA. As a consequence, they reported that they modified their lives to a larger extent and had greater knowledge about RA than those without any symptoms who were surprised, but kept calm and did not envisage changing their lifestyle as a consequence of being tested positive. Almost all participants in this study preferred precise predictive tests in the context of RA. However, more than half of them reported that they would refuse synovial biopsy or preventive medication. Recommendations for predictive testing in the field of RA were given, which could promote uptake of preventive strategies.

Conclusion: Participants showed a variety of views about predictive testing in the context of RA risk and offered specific suggestions that should be incorporated into service design and delivery in the context of future predictive testing programmes. These findings may also be relevant to prediction and prevention in the context of other diseases where multiple genetic risk factors interact with environmental risk factors to drive disease development.

1.         van Steenbergen, H.W., T.W. Huizinga, and A.H. van der Helm-van Mil, The preclinical phase of rheumatoid arthritis: what is acknowledged and what needs to be assessed? Arthritis Rheum, 2013. 65(9): p. 2219-32.