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Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease : a qualitative study
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Singhal, Juhi, Wells, Imogen, Simons, Gwenda, Wöhlke, Sabine, Raza, Karim and Falahee, Marie (2022) Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease : a qualitative study. BMC Rheumatology, 6 (1). 14. doi:10.1186/s41927-021-00244-w ISSN 2520-1026.
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WRAP-public-perceptions-predictive testing-rheumatoid-arthritis-compared-breast-cancer-early-onset-Alzheimer’s-disease-Well-2022.pdf - Published Version - Requires a PDF viewer. Available under License Creative Commons Attribution 4.0. Download (821Kb) | Preview |
Official URL: http://dx.doi.org/10.1186/s41927-021-00244-w
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.
Item Type: | Journal Article | ||||||||||||
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Subjects: | B Philosophy. Psychology. Religion > BF Psychology R Medicine > RB Pathology R Medicine > RC Internal medicine |
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Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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Library of Congress Subject Headings (LCSH): | Rheumatoid arthritis -- Diagnosis, Breast -- Cancer -- Diagnosis, Alzheimer's disease -- Diagnosis , Risk perception , Genetic screening | ||||||||||||
Journal or Publication Title: | BMC Rheumatology | ||||||||||||
Publisher: | BMC | ||||||||||||
ISSN: | 2520-1026 | ||||||||||||
Official Date: | 2 March 2022 | ||||||||||||
Dates: |
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Volume: | 6 | ||||||||||||
Number: | 1 | ||||||||||||
Article Number: | 14 | ||||||||||||
DOI: | 10.1186/s41927-021-00244-w | ||||||||||||
Status: | Peer Reviewed | ||||||||||||
Publication Status: | Published | ||||||||||||
Access rights to Published version: | Open Access (Creative Commons) | ||||||||||||
Date of first compliant deposit: | 12 October 2022 | ||||||||||||
Date of first compliant Open Access: | 13 October 2022 | ||||||||||||
RIOXX Funder/Project Grant: |
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