Perceptions of risk and predictive testing held by the first degree relatives of patients with rheumatoid arthritis in England, Austria and Germany: a qualitative study

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Abstract

Objectives: The family members of rheumatoid arthritis (RA) patients are at increased risk of developing RA and are potential candidates for predictive testing. This study explored the perceptions of first degree relatives of people with RA about being at risk of RA and engaging in predictive testing.
Methods: Thirty-four first-degree relatives (siblings and off-spring) of patients with RA from the UK, Germany and Austria participated in semi-structured interviews about their perceptions of RA risk and the prospect of predictive testing. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.
Results: First-degree relatives were aware of their susceptibility to RA, but were unsure of the extent of their risk. When considering their future risk, some relatives were concerned about the potential impact that RA would have on their lives. Relatives were concerned that knowing their actual risk would increase their anxiety and would impact decisions about their future. Also, relatives were concerned about the levels of uncertainty associated with predictive testing. Those in favour of knowing their future risk felt that they would need
additional support to understand the risk information and cope with the emotional impact of this information.
Conclusions: Identifying individuals at risk of RA may allow targeted interventions to reduce the risk and consequence of future disease; however, relatives have concerns about predictive testing and risk information. The development of strategies to quantify and communicate risk needs to take these views into account and incorporate approaches to mitigate concerns and minimize the psychological impact of risk information.
Strengths and limitations
• This study used inductive qualitative interviews to explore perceptions about risk and predictive testing in the first-degree relatives of people with RA.
• This study identified positive and negative perspectives surrounding predictive
testing, and why some people at risk may not wish to be tested.
• Further research is needed to quantify the numbers of people at risk holding
negative perceptions about predictive testing, and identify the behavioural
implications of these beliefs.
• Communicating risk information to relatives effectively while reducing the
psychological burden associated with this information, should be the focus of future interventional research.

Details

Original languageEnglish
Article numbere010555
JournalBMJ open
Volume6
Publication statusPublished - 29 Jun 2016