Perceptions of testing to predict future development of rheumatoid arthritis among the first-degree relatives of people with rheumatoid arthritis: A qualitative exploration

Research output: Contribution to journalAbstract

External organisations

  • Uppsala Univ

Abstract

Background: Early treatment of RA improves clinical outcomes. There is increasing recognition of the need to identify people at risk of RA to monitor the emergence of early symptoms, offer lifestyle advice to reduce the impact of risk factors (such as smoking) and potentially offer preventive treatment. The family members of people with RA are at an increased risk of developing RA and are likely candidates for predictive testing. However, we do not know how the relatives of people with RA feel about tests to predict their risk of developing RA in the future.

Methods: Twenty-four first degree relatives of patients with RA (8 siblings and 16 adult offspring aged between 18 and 67 years) took part in semi-structured interviews. The interviews explored their perceptions on the risk of developing RA and the use of tests to predict their future risk of developing RA. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis.

Results: First-degree relatives were aware of their susceptibility to developing RA, but were unsure of the extent of their risk. When considering their future risk, first-degree relatives were anxious and concerned about the potential impact RA would have on their lives; this worry was often heightened by their observations of the difficulties their relative with RA faced. Some were concerned that knowing their risk would increase their anxiety and would have a large impact of the decisions they made about their future. Many felt that they were lacking important information about their susceptibility to RA and were concerned about the levels of uncertainty associated with predictive testing. Some were opposed to testing and felt predictive information would have a negative impact on their lives. Those in favour of knowing their future risk felt that they would need additional support to understand the risk information, make decisions about their future and cope with the emotional impact of this information.

Conclusion: Identifying those at risk can have a number of benefits in reducing disease burden. However, the psychological impact of risk information on those identified and tested must be considered. Not all relatives wanted risk information, and those that did recommended that additional support should be offered to help them cope with its impact. Developing strategies which communicate risk information effectively while reducing the emotional burden associated with this information is essential.

Funding statement: The research leading to these data was funded within the FP7 HEALTH programme under the grant agreement FP7-HEALTH-F2-2012-305549 (EuroTEAM) and funding from the Swedish Foundation for Humanities and Social Sciences (mind-the-risk).

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

Details

Original languageEnglish
Article number154
Pages (from-to)i110
Number of pages1
JournalRheumatology
Volume54
Issue numbersuppl1
Publication statusPublished - 2015