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Table 2 Patient Quotes

From: Rheumatoid arthritis patient perceptions on the value of predictive testing for treatments: a qualitative study

Themes

Perceptions of predictive tests and patient preference of tests

Quote 1: I wouldn’t hesitate if there was any option to do anything at all that would be likely to make your life better. [female, left work due to RA]

Quote 2: I would have loved to have continued my job, and had I had this kind of test done I would probably still be in my job. [female, retired]

Quote 3. Because there’s quite a lot of waiting around, even after you’re prescribed a specific drug, and then even more because I’m just going through the process of swapping them again …So anything that reduces that amount of time that you have to wait and knowing that when you are on the drug it’s more likely to work rather than trial and error and just seeing whether it does work would definitely be something that I would consent to. [female, full-time employment]

Quote 4: My answer to that would be yes the biopsy would be more painful to go through but, if that was the best your test had produced in the biopsy…say 50 % or 60 % then I would go with that in the hope that you would refine and improve the quality of life. [female, retired]

Quote 5: I think the biopsy would give you a better indication, rather than a blood test. [male retired]

Quote 6: I would still take the drug if the test indicated that it only had a 20 % chance of effectiveness. [male, full-time employment]

Quote 7: “it will mean that you don’t have to go through years and years of trying different drugs, I think then I wouldn't even question the biopsy test”. [female, retired]

Quote 8: “I think, for me, the big thing would be accuracy and how accurate it is; if the biopsy tells you more then that’s what I should go for. [female, full-employment]

Quote 9: Yeah, similar. I mean, I guess, it depends in part, how accurate you think it could be… Like you say, it’s not such a major procedure [referring to biopsy] or whatever, but would be worth having a go at it”. [female, full-employment]

Utility of the test to manage expectations

Quote 10: I think it’s probably more of a personality sort of thing. I would imagine two people hear the same information and they react differently [male retired]

Quote 11: I’m a research scientist, so for me, I’m just nosy. The more I know about what’s going on, the more I can manage my expectations. But I guess that’s not true for most patients. So it’s trying to think of what other people would say…[female, full-employment]

Quote 12: I can see if you’ve pinned your hopes on something and it comes back ten per cent, this isn’t going to work for you, then yes, you might want to speak to someone. Yeah, because you’re sort of…so you almost go through a grief process, don’t you? [female, full-employment]

The stages of illness on decision making for predictive testing

Quote 13: I think it goes without saying. I think a test such as that, if you’re new to it you’re not aware of the journey that you’re going to undertake with rheumatoid. [male, retired]

Quote 14: “it’s barely an operation, and it’s going to help my clinicians have a better understanding of my profile, absolutely, 100 %. But it’s a question of understanding the potential journey. If you don’t understand the impact of life then you think, well, why is it necessary?”. [female left work due to RA]

Quote 15: “I think anything…as a newly diagnosed patient, or going through that diagnosis process, any sort of conversation about medications is helpful and if tests are the way forward to predict and control disease then that should be explained” [female full-employment]

Quote 16: “Right at the beginning you don’t know what it’s going to be like, what the side effects of the medication are going to be like, so as long as that is all explained to the patients this is what happens with rheumatoid arthritis then the new ones will have a better idea”. [female, left work due to RA]

Quote 17: “The group of us here are clearly enlightened and we understand what’s involved. Some are educated, some are partially educated and some are highly educated, but, from my experience, the majority have little understanding of what their condition is”. [male, retired]

Quote 18: “I mean, it might be probably better if you get new patients to have them all in one clinic where somebody could explain what the condition is that they have once they’ve had their blood tests, and then seen individually by a consultant following that group thing where they’ve been told what they’ve got, what treatments there are, what further tests they need” [female, left work due to RA]