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.