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; Marie Falahee

doi:10.1186/s41927-021-00244-w

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

BMC Rheumatol. 2022 Mar 2;6(1):14. doi: 10.1186/s41927-021-00244-w.

Authors

Juhi Singhal¹, Imogen Wells², Gwenda Simons², Sabine Wöhlke³, Karim Raza^{2

3

4

5}, Marie Falahee⁶

Affiliations

¹ College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK.
² Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham Research Laboratories, Queen Elizabeth Hospital, Birmingham, B15 2WB, UK.
³ Department of Health Sciences, Faculty of Life Sciences, Hamburg University of Applied Sciences, Hamburg, Germany.
⁴ MRC Versus Arthritis Centre for Musculoskeletal Ageing Research, Birmingham, UK.
⁵ Research Into Inflammatory Arthritis Centre Versus Arthritis, College of Medical and Dental Sciences, University of Birmingham, Birmingham, B15 2TT, UK.
⁶ Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham Research Laboratories, Queen Elizabeth Hospital, Birmingham, B15 2WB, UK. m.falahee@bham.ac.uk.

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.

Keywords: Breast cancer; Early-onset Alzheimer’s disease; Focus groups; Predictive testing; Rheumatoid arthritis; Risk perception.

Abstract

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