From: Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists
Theme | Illustrative quotes |
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1. Understanding predictions about CKD progression | • P7 [‘prediction in %a + ‘prediction in time tob’]: My initial impression is that this is clear • P4: Well, now I see that in 5 years’ time I have a 10% chance of needing kidney replacement therapy and that this isn’t even 3% in two years’ time – what does that add? I don’t understand it very well |
2. Preferences for predictions about CKD progression | • P6: yeah, it’s about your own health, isn’t it? Why wouldn’t I want to know that? And you indeed realise that, goodness, in nine years’ time I’ll need a donor kidney or kidney dialysis or something of that nature • P8: [‘prediction in time to + prediction in %’] I feel that it has some relevance. I know, yeah, maybe for some patients that may be something you’d be able to estimate, but… just considering my own case and then to think that I was on the edge and that I’m so much better now. It might not be worth all that much. I mean, yeah, no, that’s a tough one. I don’t know whether I would want to know that, whereas of course other people do want to know that kind of thing |
3. How predictions about CKD progression can help patients | • P4: [‘prediction in time to’] Of course that would help, because it would help me consider the fact that, well… I guess it’s not that crazy… whether I’d still want to go on another trip or whatever… what would be best: do it now and not in 9 years’ time, because then I’d have to take my dialysis materials with me, or I’d need to have had a kidney transplantation. I mean, yeah, this is… it’s preparing yourself for the fact that you’re going to have to take that step in 9 years’ time • P5: [‘prediction in time to’] Yes, yeah, at the times when you’re faced with kidney failure… you do start asking ‘how long do I've got before...?’… especially in relation to how long I’ve got before I need to turn my life upside down. So, erm, yeah, this would definitely help. […] yeah, I would [‘prediction in % + prediction in time to’] want to know. That way you’d be able to make or cancel plans. I think that once you’re confronted with kidney failure you really just want to know what the score is |
4. Potential negative effects of discussing predictions about CKD progression | • P7: Well, what I went through myself is that it was quite a shock when the doctor suddenly told me the [‘prediction in %’]. It’s really… I was in absolute floods of tears, so, yeah, I found the whole thing very, very confronting • P8: No, of course, it’ll be different for each patient. That makes sense, in terms of … should I start worrying more or should I start slacking off? Anyway, that is more or less my opinion |
5. How to discuss predictions about CKD progression with patients | • P9: Well, look, I would want to be told by the nephrologist in any case and if I were able to review that information myself in the future, that would be fine. But if I had no idea whatsoever and then came across this information, I’d be scared out of my mind […] and it’s likely, and this may not even apply to me per se, but if I were to come across this information all at once, I’d want the specialist to tell me that they were keeping an eye on things and recording it in this way • P8 Yeah, look, if you’re aware beforehand and know that this information will be adjusted every time… then you might be less shocked. But imagine reading 92%, then I think you would be shocked. I think it’d be better for a doctor to do that. I would only give a patient that result during a consultation – especially if the news is bad |