Table 5.

Modifying risk through preventive medicine

1	“For me, it would depend, if I knew for sure that the danger of my developing it within the next 5 years was very high, then I would definitely try to find out what kind of side effects it has. Most medicine has side effects and in the long run that might not be so good”. (Participant 31; female)
2	“I would definitely want to find out more about taking the medication. I do worry about the side-effects of some of the drugs. I’d have to take that into account as well. Mild side-effects would be fine. If it was something that affected my everyday life in a negative way now then I would have to weigh-up the pros and cons, even if it was worthwhile in the future. I’d want to know the side-effects, or the possible side-effects. Maybe even give it a trial run. Maybe I would just do that. Try it out and see because it affects people in different ways, doesn’t it? It’s not guaranteed that you would get all of the side-effects.” (Participant 20; female)
3	“I do think sometimes prevention is better than a cure but when I say prevention’s better than a cure I mean sometimes you know just by looking after yourself and things like that. Whether I could take medication for something that’s not there I’m not sure about because I would presume, I’d have to know a bit about the medication, would it be some sort of steroid you know because some medications can affect you in other ways so I would have to know what it was and what my effects would be before I would consider something like that.” (Participant 21; female)
4	“Side effects. I would be concerned about side effects. I know with a lot of medicines you get a lot of side effects. You’re taking the medication for one thing and then you’ve got something else developing or something else coming out of it. And being a diabetic and suffer with diabetes, blood pressure as well, and the digestive system. So I’m a bit worried about side effects that the medication would have.” (Participant 13; female)
5	“I don’t know really. I’d have to try it but then I’d probably read up more about it, what the side effects are, because if they’ll clash with my other medication, because if they did then the side effects I’d probably just leave it as it is then if there’s going to be worse side - if I’m going to be feeling worse than I already am or with the pain. And then maybe it all depends. I might just stick to the painkillers and try to avoid the pain. I really don’t want too many side effects.” (Participant 13; female)
6	“If I had to start taking that medication would that affect me having kids.” (Participant 5; female)
7	“They’ve got side effects, because I know that my mum came off the methotrexate because I think, she’d got some – I think on the x-rays of her lungs and that, there was some shadowing, so I think he took her off the methotrexate because of that.” (Participant 2; female)
8	“So, unless you can tell me it’s going to be a significant benefit at preventing onset of disease, again, I wouldn’t want to take any medication unless it was going to really significantly reduce my chances of developing it. So it would depend on the sort of risk … benefit profile of the two.” (Participant 10; female)
9	“I would be disinclined to take any medicines purely based on a probability factor. I would want more definitive evidence before I’d start taking medicines.” (Participant 4; male)
10	“I’ve got to take a medication for how long, the rest of my life? … It’s a big commitment when the odds of developing the disease is still fairly high if I’ve got a 50% risk of still developing it, whereas if you tell me, ‘Well, actually, if you take it and based on what we can tell you about your predictability factors, your odds of developing the disease are gonna be down to 5%,’ then I might consider it..” (Participant 10; female).
11	“But it’s the weighing up, do I want to take a medication for the rest of my life, potentially, if it’s preventative? What happens if you stop it? Again, you need trials to go on a long, long time to tell us that, and you’re just not gonna have that data … you know, even once you’ve got your predictive things, you’re not gonna know how long somebody has to stay on that medication to prevent it. So it’s a bit commitment for the rest of your life, to stay on a medication.” (Participant 10; female).
12	“Okay, so I think if it’s a number, I think it’d have to be fairly high for me to wanna take a preventative tablet. So probably that’d be something I think I’d give some thought, I guess, but I suppose 50% probably wouldn’t be high enough for me to want to …do preventative medicine, but obviously I’d be looking out for symptoms to start, you know … medication when I developed symptoms. But, no, if it was as high as, sort of 70%, 80%, I probably be more likely to say, Okay, let’s do the preventative.” (Participant 01; female)
13	“Nothing, I don’t like pills I don’t want to say, but I don’t think much of taking medicine, I’ve always been someone who didn’t like taking medicine, in that case (taking medicine to reduce the risk of developing the disease) I would say no” (Participant 32; male).
14	“Just I never liked taking medication. Only if I have to I would take it. If I can get away with not taking it I will not take it. I have done it in the past. Get away with things. I’ve been told I’ve got something, not took medicine for it. They did a lot of trying to persuade me and I said no. I was adamant that I hadn’t got that, which I was right. So I didn’t take the medication and 12 months they said, ‘Right, okay, you’re clear.’ They kept prescribing me the medication but I wouldn’t take it.” (Participant 13; female)
15	“I try to exercise. So, I don’t know that I could modify my lifestyle, but if it was a choice – if I had options to changing my lifestyle, and it was a choice between that and the long-term medication, and the benefits were equal between the two, I’d go for lifestyle over a medication.” (Participant 10; female)
16	“Yeah, I think (with) that kind of information, then, I’d be much more keen to, sort of, sort out what I needed to do to try and prevent that becoming a problem; if I could at that point take some medication to, sort of, reduce the antibodies or you know, head it of before it became a big problem.” (Participant 2; female, 42)
17	“Dad’s been pretty bad with it at times and fortunately, at the moment, he seems to be on a fairly even keel, which is good. So I think having seen at first- hand, I’d be much more willing to ... And then given that, if my testing came back and said I’d had a high risk, I’d be much more willing to, sort of, then consider medication - particularly if it was (going to be) affecting my arms - a mild tablet, and the side effects weren’t too bad.” (Participant 1; female)
18	“I don’t know whether, then, you’d prescribe medication type thing or whether you just leave it alone and see what happens, but be mindful that you could have symptomatic, sort of, issues going forward. And if you had those, then you’d probably want to report it, you know, to make doctors more aware, and maybe you’d be more mindful of perhaps your condition and be aware of changes in your body, perhaps.” (Participant 6; male)
19	“So there obviously are side effects to some of the drugs, so, I guess, unless you were probably showing symptoms, you probably wouldn’t want to go on those sorts of things. But other things like, just, you know, for your bones or whatever, I guess there you would be more than, you know, happier to take that sort of thing in the early stages.” (Participant 2; female)
20	“If I’m taking it I’d expect it to work for me. There’s no point in taking anything that is just not going to work for you and it’s not doing the job. Like I’ve always said, I’m not a keen person on medication but if I’m taking it then I would have expectations for it to work.” (Participant 13; female)