Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset alzheimer’s disease: a qualitative study

Juhi Singhal, Imogen Wells, Gwenda Simons, Sabine Wöhlke, Karim Raza, M Falahee

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Abstract

Background
There is increasing research focus on prediction and prevention of rheumatoid arthritis (RA). Information about risk of RA is increasingly available via direct-to-consumer testing. However, there is limited understanding of public perceptions around predictive testing for RA. This study explores public perceptions of predictive testing for RA in comparison to breast cancer (BC) and early-onset Alzheimer’s disease (AD).

Methods
Four focus groups with 21 members of the public were conducted using hypothetical vignettes about predictive testing for each disease. Transcripts of focus group proceedings were analysed inductively using thematic analysis.

Results
Thematic analysis of the data produced three key themes: decision-making factors, consequences, and consumer needs. Factors suggested that might influence decision-making about predictive testing included family history, fear, and perceived severity and treatability of the illness. RA was perceived to be less severe and more treatable than BC/AD. Potential consequences of predictive testing across all diseases included lifestyle modification, planning for the future and discrimination by employers or insurers. Predictive testing for RA was perceived to have less potential for negative psychological consequences than other diseases. Participants highlighted that individuals undertaking predictive testing should be signposted to appropriate support services and receive information on the accuracy of predictive testing. It was suggested that strategies to mitigate concerns regarding communication and confidentiality of risk results are required.

Conclusions
The findings of this study reflect public misunderstandings regarding RA that may impact the uptake of and responses to predictive testing, and key informational needs of individuals considering a predictive test. Predictive strategies should be accompanied by awareness-raising initiatives and informational resources.
Original languageEnglish
Article number14
JournalBMC Rheumatology
Volume6
DOIs
Publication statusPublished - 2 Mar 2022

Keywords

  • Predictive testing
  • Risk perception
  • Rheumatoid arthritis
  • Breast cancer
  • Early-onset Alzheimer’s disease
  • Focus groups

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