Table 2

Focus group discussion participants’ quotes

Quote numberQuoteParticipant
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.’
Q3Interviewer: ‘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.’
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].’
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.’
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).’
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’.’
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?’
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.’
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.’
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.’
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.’
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.’
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…’
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.’
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.’
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.