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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
Univ Birmingham, Inst Inflammat & Ageing, Coll Med & Dent Sci, Birmingham, W Midlands, England.;Nottingham Trent Univ, Div Psychol, Nottingham, England..
Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria.;Univ Appl Sci Hlth Profess, Upper Austria, Austria..
Univ Erlangen Nurnberg, Dept Internal Med 3, Erlangen, Germany..
Med Univ Vienna, Div Rheumatol, Dept Internal Med 3, Vienna, Austria..
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2016 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 6, e010555Article in journal (Refereed) Published
Abstract [en]

Objectives The family members of patients with rheumatoid arthritis (RA) 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 34 first-degree relatives (siblings and offspring) of patients with RA from the UK, Germany and Austria participated in semistructured 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 affect 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 minimise the psychological impact of risk information.

Place, publisher, year, edition, pages
2016. Vol. 6, no 6, e010555
Keyword [en]
Risk, Rheumatoid Arthritis, QUALITATIVE RESEARCH
National Category
Medical Ethics
Identifiers
URN: urn:nbn:se:uu:diva-303406DOI: 10.1136/bmjopen-2015-010555ISI: 000380237100046OAI: oai:DiVA.org:uu-303406DiVA: diva2:971738
Funder
EU, FP7, Seventh Framework Programme, FP7-HEALTH-F2-2012-305549Riksbankens Jubileumsfond, M13-0260:1
Available from: 2016-09-19 Created: 2016-09-19 Last updated: 2016-09-19Bibliographically approved

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Hansson, Mats
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