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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
  1. Rebecca J Stack1,2,
  2. Michaela Stoffer3,4,
  3. Mathias Englbrecht5,
  4. Erika Mosor3,
  5. Marie Falahee1,
  6. Gwenda Simons1,
  7. Josef Smolen3,
  8. Georg Schett5,
  9. Chris D Buckley1,2,
  10. Kanta Kumar6,
  11. Mats Hansson7,
  12. Axel Hueber5,
  13. Tanja Stamm3,
  14. Karim Raza1,8
  1. 1Institute for Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
  2. 2Division of Psychology, Nottingham Trent University, Nottingham, UK
  3. 3Division of Rheumatology, Department of Internal Medicine III, Medical University of Vienna, Vienna, Austria
  4. 4University of Applied Sciences for Health Professionals, Upper Austria, Austria
  5. 5Department of Internal Medicine 3, University of Erlangen-Nuremberg, Erlangen, Germany
  6. 6Faculty of Medical and Human Sciences, School of Nursing, University of Manchester, Manchester, UK
  7. 7Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden
  8. 8Department of Rheumatology, Sandwell & West Birmingham Hospitals NHS Trust, Birmingham, UK
  1. Correspondence to Dr Rebecca J Stack; rebecca.stack{at}ntu.ac.uk

Abstract

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.

  • Risk
  • Rheumatoid Arthritis
  • QUALITATIVE RESEARCH

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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