Table 2. GPs’ rationale for alternative labels
CKD as a new construct 'I don't use the word chronic kidney disease because that’s a new term, only been in existence in the past 10 years or so, before there was no chronic kidney disease. So I tell them, look your kidneys are not working as well as they should, that’s how I tell them, we need to protect them because if there’s damage to the kidneys, you can't go back on it, so we need to protect your kidneys and then I tell them what things will damage the kidneys.' (GP08)
Patient misunderstanding of terminology 'I kind of think their take on that will be, oh I've got this awful terrible thing that is going to kill me, which it just sounds so bad.' (GP25)
'I think chronic often means, for a lot of people it means severe and drastic and so it’s a very negative connotation and I think that generally I don't find it very helpful to say that.' (GP50)
'It upsets patients and puts them into feeling anxious that there’s something wrong with them, so it directly impacts on their mental health. Disease is not a word I use when I'm talking to them about a diagnosis.' (GP51)
Balance of lay and medical terminology to ensure understanding 'I suppose you'd probably soften the blow and when you first start talking to them, you'll say, oh look your kidneys aren't great, they're not performing as well.' (GP18)
'I'd say, oh look the medical term is CKD which means chronic kidney disease and I tell them, it’s just a word that we — it’s what it’s called but the way I like to think of it is, is that your kidneys aren't working as well.' (GP36)
Ensure patient understanding of the context of kidney disease 'Sometimes again it’s a case of we might be diagnosing diabetes at the next appointment, … and talking about kidneys as part of that.' (GP36)
Rationale for always using the label 'CKD' 'But I always explain to them, you've got chronic kidney disease, chronic means that it’s a longstanding disease, it’s been there for more than three months and it’s not going to go away.' (GP75)
'I think chronic kidney disease sounds — will be my choice, it sounds better than what people use of renal failure or kidney failure. That word failure actually freak[s] out a lot patients, it’s just like the kidneys not working, you know? So chronic kidney disease give[s] them an impression that it’s something still treatable, manageable, there is a hope to change that because they've got a disease.' (GP44)
  • CKD = chronic kidney disease