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

Abstract

ObjectivesThe 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.Methods34 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.ResultsFirst-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.ConclusionsIdentifying 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.

I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis

“…Being aware of their risk status would allow them to react appropriately and rapidly, if symptoms such as synovial joint swelling occurred. In accordance with the study results of Stack et al (23), exploring the perceptions of risk and predictive testing held by the first-degree relatives of patients with RA, some participants suggested that ongoing support by health professionals should be offered for those who have additional questions regarding their personal risk.…”

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

“…During the early planning stages of EuroTEAM, several national RA organisations and patient groups in a range of European countries [ Table 2] were approached in order to seek endorsement of the project, provide advice and support for the funding application, and to identify potential PRPs. Additional PRPs were recruited Attending and contributing to annual scientific meetings and regular teleconferences Development of a glossary resource (WP1-4) Contributing to a meta-synthesis of qualitative literature on public perceptions of predictive testing [13,14] (WP4) Contributing to the development of interview schedules (including question setting) and the interpretation of qualitative data [12,46] (WP4) Contributing to the development of informational resources for those at risk (WP4) Evaluating a web-based platform for the communication of risk information (WP4) Developing a questionnaire for patients undergoing a lymph node biopsy procedure (WP3) Developing informational resources for patients about RA such as the 'Metaphor Project' (a collaboration between Eva C Johansson (PRP) and Dr. Heidi Wähämaa from the Karolinska Institutet) exploring the communication of scientific concepts via the use of metaphors and visual representations Contributing to the project website (e.g. providing news items and reports, creating subtitles for videos) (WP4) Developing lay summaries of EuroTEAM methods and findings (e.g.…”

“…There has been a growing appreciation of the benefits of PPI within rheumatology research [6,7]. For example, patients have contributed to: the development of questionnaires to assess help-seeking behaviours in patients with new onset rheumatoid arthritis (RA) [8] and hypothetical reactions to the symptoms of RA amongst members of the public [9]; the development of interview schedules [10][11][12]; systematic reviews [13][14][15]; generating research ideas [16]; rheumatology conferences [17] and the development of international research recommendations [18][19][20].…”

“…An innovative aspect of the EuroTEAM project was that it encompassed both laboratory based science that addressed the identification of predictive biomarkers [33][34][35][36][37][38][39] and psychosocial research, that explored the perspectives of potential end-users of predictive tests for RA, and how disease related risk information could be communicated effectively to those at risk of developing RA in the future [40][41][42][43][44]. In order to ensure the quality and relevance of the research and to facilitate effective translation and dissemination of the research findings, PPI was considered an essential part of EuroTEAM from its inception.…”

Comorbidities in Anti-Cyclic Citrullinated Peptide Positive At-Risk Individuals Do Not Differ from Those Patients with Early Inflammatory Arthritis

“…Within other cohorts, the psychological implications of an at-risk diagnosis have been reported. These have manifest as symptoms associated with anxiety and depression ( 14 – 16 ). Through focus group discussion and qualitative research techniques, researchers were able to demonstrate a theme of fear and uncertainty of a future diagnosis of RA ( 14 , 15 ).…”