Patients’ perceptions of their relatives’ risk of developing rheumatoid arthritis and of the potential for risk communication, prediction and modulation

Objectives:
To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives about risk and its modulation.

Methods:
Twenty-one RA patients took part in semi-structured interviews.

Results:
Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of their perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions.

Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies.

Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualised as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.

Conclusions:
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. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes. This article is protected by copyright. All rights reserved.