Quote number | Quote | Participant |
Q1 | ‘You don’t really have a physical reason to do it, because you don’t have the pain and you don’t have the symptoms.’ | 3.3 |
Q2 | ‘Why put something in my body when it’s not necessary? With me, it also plays a role that the development [of symptoms] is fairly stable.’ | 2.2 |
Q3 | Interviewer: ‘But I’m just curious, because you have made that choice [to participate in the RCT].’ Participant: ‘Yeah, because I was in so much pain, I was willing to try anything.’ | 3.4 |
Q4 | ‘The chance that I would do it would increase hand over hand if I had severe pain.’ | 3.2 |
Q5 | ‘Of course, that plays a role, the chance of getting it. If there is a good chance of getting it, then maybe that’s a reason to… [participate in the RCT].’ | 2.2 |
Q6 | ‘Yeah, I looked it [information about RA] up online, and yes, then you see how bad it can get, and I think, well, I’m not that far along yet.’ | 2.2 |
Q7 | ‘At a risk of 60%, and it running in my family, yes then I probably would have [participated in the RCT].’ | 2.2 |
Q8 | ‘It’s got to be really, really sure it is necessary (to start preventive medication).’ | 2.4 |
Q9 | ‘RA is in my family unfortunately. My mother, my grandmother, they’re both gone (…). And the fact that I participate in the medication trial is just like, yes, I’ve seen what RA can do.’ | 1.4 |
Q10 | ‘I really got it as a bad news announcement, you know. And yeah, I thought that it was a pretty intense message. It was also brought like ‘You have a serious problem’.’ | 2.5 |
Q11 | ‘Yeah, I just wanted to get rid of the pain you know. That’s been my motive [to participate in the trial] (…) I had symptoms. You go see a doctor, they can’t find anything, but you keep having pain, so you go back to your doctor. You go to the rheumatologist, yeah okay, one [autoantibody] factor then. Well, you keep having pain so you go to an internist, you keep going. The internist does blood tests again and then you’re a year further along but you keep having pain. Then you think, okay, now what?’ | 1.2 |
Q12 | ‘Well, I actually participated because then I would be closely monitored and I thought to myself, that’s a good thing for me too.’ | 3.5 |
Q13 | ‘And, of course, what also matters is the accessibility. I mean, if I have pain and I call my GP who refers me to the rheumatologist, I have to wait 6 to 12 weeks and by that time, I’m doing a lot better. So by the time I get to see someone there’s nothing left (of my symptoms). Whereas during a trial, I can come right away and someone will see me and that’s the only way to get diagnosed.’ | 3.3 |
Q14 | ‘I wanted to participate [in the study] but I just didn’t dare to take extra medication.’ | 2.1 |
Q15 | ‘I already use medication, should I then use extra on top of that? Your liver still has to be able to process it all.’ | 3.3 |
Q16 | ‘One reason not to participate is that I find it a little scary to take something when I’m not sure if it even helps.’ | 1.5 |
Q17 | ‘If a study were to start tomorrow with natural medication, for example aloe vera, put me at the top of the list! I want to know what effect that has.’ | 2.4 |
Q18 | ‘I went for diet. I radically broke with everything I ate before and focused on fruit, nuts, vegetables, fish. No more caffeine, then, bread, white rice, pasta, potatoes. I left all that stuff five years ago. And in 2 months, the rheumatism went away.’ | 1.3 |
Q19 | ‘My dad used statins when it hadn’t been in the news yet that is was that bad. And when it did get in the news, he quit and he’s doing a lot better now.’ | 2.4 |
Q20 | ‘Why would I take a cholesterol-lowering drug if I don’t have high cholesterol?’ | 2.2 |
Q21 | ‘I didn’t participate because I have low cholesterol levels. Your body doesn’t make cholesterol for nothing. So I don’t think it’s necessary to further decrease it with medication (…). Then there won’t be anything left.’ | 3.3 |
Q22 | ‘That is the difficulty of research in prevention: what is the chance, that it will be effective? If you say, well, we have to test it but we’re fairly sure it works, there is more reason to participate.’ | 2.2 |
Q23 | ‘You’re always going to get worse if you don’t do something.’ | 2.5 |
Q24 | ‘Because I am very afraid of needles, so in terms of blood tests, that was very scary. Sometimes eleven, twelve tubes of blood and then I sat there and I thought: gosh, what am I doing?’ | 3.1 |
Q25 | ‘I found it very pleasant that attention was paid to me and attention was paid to my feelings of powerlessness about the disease, so to speak.’ | 1.1 |
Q26 | ‘I appreciate coming here. And yes, whatever comes out of the test, it’s also towards my surroundings: I have something. (…) I’ve sometimes indicated: Yes, I would like to walk, but I just can’t do it today. “Nonsense, you have to move” [they say]. So for me, if I come here, there’s something going on. That doesn’t mean that I can’t move or anything but that I just get a little more recognition for, yeah…’ | 1.2 |
Q27 | ‘I participated in the trial because maybe the next generation can benefit from it. So I’m actually helping people for later. It’s a matter of attitude.’ | 1.4 |
Q28 | ‘Rheumatism is in my family unfortunately. I’ve seen what it can do. I don’t want anyone to have to go through that.’ | 1.4 |
Q29 | ‘The rheumatologist already explained a little about the study before I came here.(…)I was able to ask him some questions and he was enthusiastic about it himself. I immediately said yes.’ | 3.6 |
Q30 | ‘The chance of me doing it would increase hand over hand if I’m well-informed.’ | 3.2 |
Information on participants: 3.3 (F, 55 years, declined STAPRA); 2.2 (M, 57 years, declined STAPRA); 3.4 (F, 58 years, declined STAPRA); 3.2 (M, 54 years, declined STAPRA); 2.4 (F, 43 years, declined STAPRA); 1.4 (F, 58 years, participated in STAPRA); 2.5 (M, 68 years, participated in STAPRA); 1.2 (M, 63 years, participated in STAPRA); 3.5 (F, 52 years, participated in STAPRA); 2.1 (M, 64 years, declined APIPPRA); 1.5 (M, 72 years, declined STAPRA); 1.3 (M, 47 years, declined STAPRA); 3.1 (F, 73 years, participated in APIPPRA); 1.1 (F, 70 years, participated in STAPRA); 3.6 (M, 61 years, participated in STAPRA).
APIPPRA, Arthritis Prevention In the Pre-clinical Phase of RA with abatacept; GP, general practitioner; RA, rheumatoid arthritis; RCT, randomised controlled trial; STAPRA, STAtins to Prevent Rheumatoid Arthritis.