Viewed as a relatively new condition in clinical practice, participants expressed tensions in managing early-stage CKD in primary care.
A common theme across GP and nurse accounts was anxiety surrounding the disclosure of CKD with patients. The tensions underpinning care related to identifying and discussing CKD in older people and patients with stage 3A, embedding early-stage CKD within vascular care, and the distribution of work within the practice team.
Tension 1: identifying and discussing CKD in older people and patients with stage 3A
Reflecting the purpose of the CLAHRC collaborative project, all participants described a shift to actively identifying and coding CKD. This included all adult patients identified by an estimated glomerular filtration rate (eGFR) <60 ml/min/1.73 m2, irrespective of age, being added to a practice's CKD register:
‘So the first thing was really to validate our register of CKD … And we had a huge jump of patients on the register, because we in-house had actually [previously] decided that all patients over the age of 80 would not be on the register. That this was a progressive natural deterioration, physiological deterioration in kidney function, so we wouldn't actually put them on the register because that meant more work. To get your points of course, you had to do the necessary test that linked in with QOF. But after we had been on the collaborative, of course, one of the first sessions was that really everybody regardless of age should go on. So this is where the big jump was in our prevalence of CKD.’ (GP02)
However, this shift in activity created a dilemma about whether and how to discuss these findings, particularly with older people and those with mild renal impairment:
‘I mean I think that's the issue, because I suppose CKD in an eighty year old, you've got an eGFR of 59 (ml/min/1.73m2), is that really CKD or is that just you are 89. I think certainly where I would hope the others have discussed, certainly I am, is … if you've got CKD or you're young and you've got proteinuria, definitely that is a really important thing to hammer in. But yeah, 80/90 year olds, I wouldn't suggest we're probably discussing it, if they've got a mild CKD3.’ (GP06)
For most, despite endeavours to identify and code CKD, there was uncertainty on the merits of disclosure, with a need to ‘underplay’ CKD in order to avoid frightening patients. In the main, participants described a move to inform patients of early-stage CKD with efforts focused on reassurance. This included reference to it being a normal part of ageing:
‘I try and reassure them at the beginning that there isn't anything actually to worry about, because they think they've got another new condition. So I explain that we're looking at kidneys much more and it's recognised that they've got more to do with heart disease and blood pressure and what have you and that we're just monitoring … But just to let them know, I feel that they should know that they're on a register and tell them not to worry. If there's anything to worry about we'll let them know.’ (nurse 11)
‘… And I'll say to them if I was 88 I'd expect my kidneys might be a bit under par as well, and that's sometimes how I would reassure people who are just very marginally in and fairly stable at that sort of level.’ (GP0802)
Some clinicians described a shift in how CKD in older people was viewed, with increasing awareness of a patient's renal function and of taking this into account when determining an individual's overall health. This was seen to help support their clinical decision making around the management of other conditions and improve the management of multimorbidity.
‘… then you realise they also have CKD so it gives you the level of awareness. This patient has got … is up the CKD spectrum and we need to be especially aware of how we intervene with their other morbidities.’ (GP0702)
If disclosure did occur, it was generally framed in the form of reassurance. However, at the other end of a spectrum of responses, one atypical GP proposed a more proactive approach and suggested that in order to reduce susceptibility to kidney injury, patients, irrespective of age, should carry a card highlighting their level of renal function:
‘If you've got CKD 3A at 80, you need a card. You haven't got a kidney disease, you're vulnerable to something going wrong if somebody gives you the wrong tablets or the wrong drugs, and you need a card — like you've had your platinum card.’ (GP05)
Tension 2: embedding early-stage CKD within vascular care
Participants indicated that the management of vascular risk was more readily discussed with younger patients, those with CKD stage 3B, or those with pre-existing vascular conditions. However, a key tension for professionals was a need to address vascular risk and ‘deflect’ progression to renal failure without frightening patients. A common theme was a reticence to use the label of ‘CKD’:
‘So, I try not to panic them … they don't like this CKD label, which is why I don't tend to dwell on that, perhaps, very much, I tend to just skim over it and then go into the explanation rather than saying each time they come, “oh yes, and you've got CKD, haven't you?”.’ (GP04)
Rather than referring to CKD as a distinct disease entity, professionals described finding it helpful to refer to CKD as a marker of ‘wellbeing’, with efforts focused on improving overall cardiovascular health. This was linked to a need for tighter blood pressure control and, for some, an opportunity to introduce lifestyle change:
‘So I think we focus on maintaining the health as it is, rather than actually saying that if they heard the words “CKD” then I think some patients can initially get panicky … I think we just think of CKD as a CVD [cardiovascular disease] risk.’ (GP09)
‘I don't call it disease, I call it lack of wellness … If you say “disease”, people get frightened or stressed … What it's showing is a messenger of your lack of wellness and how that changes with age and, if it's worse than it should be, then it's reflecting on your diabetes and hypertension in your lifestyle. That's how I do it.’ (GP05)
Overall, analysis indicated that the management of early-stage CKD had become embedded in review appointments for patients with known vascular-related conditions, such as diabetes and ischaemic heart disease:
‘… all patients get an annual review in their birthday month. And I think you'll find that, that happens in a lot of the practices, you know, whether it be stroke, IHD [ischaemic heart disease], hypertension. Their renal profile is done as part of those annual reviews. And we now have obviously the CKD register within the practice, which is obviously as part of QOF. And those patients have annual reviews now as well, yeah.’ (nurse 01)
Participants tended to describe a sequential approach to these vascular review appointments, generally undertaken by practice nurses. They were framed as an ‘MOT’, with accounts indicating that patients had normalised the process of coming in for reviews. This usually entailed an initial focus on patients requesting feedback on recently performed blood and urine tests. The appointments then tended to proceed through a checklist approach, working through a range of parameters. As such, the introduction of renal function was viewed as another parameter to be addressed and was not seen to disrupt the review process that already existed.
With this, there was also evidence to suggest that consultations focused on keeping individual disease-specific parameters under control:
‘ … when I do a diabetic review? Yeah, yeah, yeah, right. So they bring their little blue book in which is a record book. I check their height, weight, well the weight really, they bring a urine sample in. I dip that for protein obviously and sugar. And then we send it off for an albumin, creatinine ratio. I think that's just standard anyway. Look at the blood tests, make sure they're alright, if their HbA1c's [haemoglobin A1c] up, advise them, either increase medication, first of all check that they are complying with their medication because as you know, some of them don't. So that's why their blood tests are all up the shoot but anyway, so do that and then if they haven't been taking their medication, then give them 3 months to sort of take medication, check their HbA1c again, look at their kidney profile, if the GFR's low, then just advise them it's a little bit low, explain why, as I've just done.’ (nurse 07)
For some participants, this sequential approach to vascular reviews appeared to be associated with a difficulty in prioritising parameters and results, both in terms of reducing space to discuss early-stage CKD as well as concerns that this might be a disruptive experience for patients:
‘I don't think it's intentional. I think it is often because patients come in for the diabetic review, or the CHD review, or the hypertension review, erm, and so you do all the things that you would do for somebody with CKD, but you … perhaps you just don't actually address it as, “Well you've got this problem as well” … well, no, maybe it does actually because maybe when they've got so many other things, because you know you're doing the monitoring that it would require, I think you're less likely to bring it up … Like I say, you're more likely to discuss it with somebody who's maybe only got that or perhaps one other thing, you know.’ (nurse 10)
‘… because we're very good at giving them figures and saying,” oh look your eGFR's this and your cholesterol this and your HbA1c is this” and they all look at … they must go out shell shocked sometimes …’ (nurse 04)
Tension 3: the distribution of work within the practice team
For some professionals, in order to reduce patient anxiety, disclosure was viewed to be a discrete event that should take place during consultations with GPs or nurses. For others, largely based on an awareness of difficult experiences, disclosure was seen as distributed in nature and that a ‘whole team’ approach was required to reduce the anxiety surrounding the management of CKD.
There were also accounts to indicate that uncertainty around management including the meaningfulness of identifying and disclosing early-stage CKD (see tension 1) had led to this activity being delegated to other members of the practice team, particularly practice nurses:
‘When I have had these consultations with patients, their face changes. You almost feel like you have kind of upset them, and it took a lot of my own energy and training to capture it in that consultation, bring them back and sell it to them to say, “This is no reason for panic”, but it always sounded hollow because they still remained anxious for quite a while. And I felt, when I spoke to the other GPs, perhaps that is why they kind of kept delegating it to different people rather than take ownership themselves, whereas they were much more comfortable selling IHD and diabetes.’ (GP0702)
There were examples of other situations in which patients (and other practice staff) encountered CKD. These included invitation for renal assessment and review appointments, as well as contact with reception staff to check test results.
There was variation in the extent to which participating GPs and nurses were aware of the content of letters inviting patients to come in for further assessment of their renal profile or to attend for annual vascular review appointments. For some, awareness had been raised following concerns that the wording of letters, including those from hospital appointments, had created anxiety in patients:
‘It worries people because they think it's a CKD, they think that something very serious is wrong … because sometimes we do send the test forms out to patients in the post … I make a request there and it linked a problem ahead and it does say CKD … so for those people that may not have had that conversation about their kidney function that has alarmed some people … They've phoned reception really and said I've received a letter to say I need a blood test and it says, you know, I've got kidney disease …’ (nurse 1102)
As part of care delivery, patients usually made initial contact via the reception staff to find out their results, which, if necessary, was then followed by an appointment with either a GP or nurse. A few participants described efforts to reduce patient anxiety, which included giving more specific instructions to the reception staff. This included stating if there had been any changes in renal function, whether the patient needed to be seen, who to be seen by, and the level of urgency:
‘I would put “slight deterioration please book an appointment with GP”. They would tend to be the words I would use for the receptionist to read out. And then I would probably give the receptionist an indication of how quickly I wanted to see them … if you just put “See GP”, you find that your appointments are chocker block with people that have just come to see the GP because it says see GP on the results. And there's been no indication of the level of urgency for that … so if you put see GP at next routine appointment they know then that it's not urgent urgent and they feel content in themselves.’ (GP0802)
However, in the main, there was little evidence that the potential for patient anxiety surrounding CKD was actively taken into account when reporting results. Steps taken by health professionals to action results tended to be informed by the clinical information system used by the practice:
‘So they have a picking list and they can just click on that and then it will appear in the notes … To come in and see the nurse, like I say, or normal, or tell the patient okay — you know, there's various different things they can pick … It might say to come in, potassium low, or … to come in, and repeat, but it doesn't really give the reception staff much to tell the patient other than saying the doctor wants you to have a repeat test … And then they'll come in and say, “Why have I got to have it done again?”. (nurse 10)
‘People tend to pick from the drop down …’ (nurse 1102)
Analysis suggested that vascular review appointments and those concerning CKD tended to be initially framed by patients requesting their test results, with professional efforts subsequently focused on reducing anxiety and on needing to reassure patients (see tensions 1 and 2):
‘Are my blood results back? That's the big thing, is my blood results back? Yeah … And they always want to know that everything's alright, when they do the blood pressure, very often I'll do it a couple of times because they've been in the waiting room getting anxious, they walk in and, you know, sometimes they've not, sort of, calmed down, you know, so I usually do the blood pressure two or three times with some patients because they're anxious and it's … is it alright, you know.’ (nurse 02)