Perceptions of risk and communication about the risk of relatives developing rheumatoid arthritis: a qualitative study of patients’ perceptions

Background: Early treatment of RA is associated with improved clinical outcomes. There is considerable research interest in the identification of biomarkers to predict the development of RA in order to facilitate early preventive interventions. First-degree relatives of people with RA are at an increased risk of developing RA and are therefore likely candidates for predictive/preventive approaches. However, access to this group is currently dependent on the cooperation of existing patients with a diagnosis of RA. It is therefore important to understand patients’ perceptions of RA risk and their willingness to communicate with their relatives about the risk of developing RA.

Methods: Twenty-one RA patients (15 females and 6 males, 35–80 years of age) took part in semi-structured interviews exploring perceptions of the risk of RA, family communication about risk and predictive testing. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.

Results: Many patients were aware of genetic risk factors for RA and identified relatives that they were concerned about being at risk of developing RA in the future. Some patients described feeling responsible or guilty for their relatives’ being at risk of RA. Environmental risk factors such as infection and psychosocial stress were also suggested, although few patients mentioned that smoking is associated with an increased risk of RA. Patients described a lack of public awareness about RA and the causes of RA. They also referred to a lack of understanding by their relatives as well as by the general public of the negative impact that RA has on their quality of life. Patients generally held positive views of predictive testing and expressed a willingness to communicate with their relatives about their risk of RA. However, many patients identified relatives that they were not in contact with or communicated with infrequently. Some mentioned that they would not pass on information to particular relatives who they did not get on with. Patients referred to choosing which relatives to communicate with and described likely variation among relatives in their receptivity to risk information and their likelihood of acting on such information. Reasons suggested for this included relatives being busy, being in denial of their susceptibility, preferring to deal with things when they happen, feeling that RA is not serious enough to warrant action and avoiding anxiety.

Conclusion: Accurate information about risk factors for RA and the potential impact of RA on quality of life is needed to support family communication about RA risk. Strategies for the management of RA that target relatives of existing patients should take into account that communication of risk information via patients may be restricted and/or selective.

Disclosure statement: The authors have declared no conflicts of interest.