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. 2021 Nov 8;81(2):159–168. doi: 10.1136/annrheumdis-2021-221160

Table 4.

Theme 3 illustrative quotes

Theme 3: perceptions of predictive testing for RA
Descriptive theme Illustrative quotes
Benefits of predictive testing
 Individuals at-risk of RA perceived predictive testing as useful. ‘I think that with kind of information, I’d be more keen to, sort of, sort out what I needed to do to try and prevent that becoming a problem. If I could take some sort of medication to…head it off before it became a big problem’. 31
Yes, I have pain in the joints regularly and that’s why it was interesting to me to find out the results. I think it was just confirmation that my feeling wasn’t just made up of thin air’.28
Decision to undergo predictive testing
 Presence of symptoms, perceived effectiveness and understanding of the impact of disease affect individuals’ decision to undergo predictive testing ‘If there were perhaps a treatment that were extremely preventive and very effective at lessening the risk of developing such a disease, I absolutely would take the test because that to me leads to something that is preventive. That leaves me being able to take some action’.31
‘It’s like looking into a crystal ball [of a fortune teller] and saying to you, “Oh, you could potentially get rheumatoid arthritis.” And then, always, I have images of people in my mind who have deformities and disabilities’.28
Concerns about predictive testing
 Individuals at-risk of RA had concerns about predictive testing. ‘Because if told me—it’s only how likely, it’s not a, ‘You will develop it,’ and it doesn’t tell you when you will develop it. So I think if somebody said to me, ‘There’s this test out there and it’ll tell you whether you might develop it,’ I wouldn’t want it, because you could just live your life in fear and never actually develop it. So unless it was 100% guaranteed, and somebody could say, ‘You will develop it within this time frame,’ I don’t wanna [want to] spend the next 30 years worrying about something, when I could be enjoying those 30 years. So, no, I’d probably—it depends on the exact details of the test’.31
‘Statistics like 1 out of 10 really don’t mean a thing to me. The way I reason is, I am not 1 out of 10. That’s how I feel about it, it won’t be me’.33

RA, rheumatoid arthritis.