We present below how pre-diabetes is managed by different clinicians and practices. We then discuss the main themes that arose when discussing whether to inform, and/or how to inform and treat, a very old patient with pre-diabetes.
Figure 2 uses the information given to us by the study participants to illustrate the variety of ways in which pre-diabetes is managed in different practices and by different clinicians. The start of a patient’s pre-diabetic “journey” is when they undergo an HbA1c or FBG test. Apart from one nurse practitioner, the non-GP respondents were not involved in filing blood tests and had no influence on which patients would have been labelled as pre-diabetic by the clinician who had filed their blood results. Although some HbA1c testing is opportunistic and based on a clinician’s assessment of risk, our participants reported that most of it happens as part of routine disease monitoring. All interviewed participants had a role which involved informing patients that they had pre-diabetes. For most of the nurses, the HCA and the patient advocate, the adjudication that a patient should be labelled as pre-diabetic was not made by them. However, most had some degree of autonomy as to how that diagnosis was relayed to the patient and what treatment or recommendations the patient was given.
“It depends on the patient” - identification, adjudication and offers of treatment using a person-centred approach
There was variation in whether clinicians informed the patient of the diagnosis, how they informed the patient of the diagnosis and whether they offered treatment/advice or referral on to the DPP to very old patients. Concerning the disclosure of a pre-diabetes diagnosis to very elderly patients, some professionals would not always inform. Nevertheless, there was a split in our participants. Seven of our GPs reported that they will sometimes not inform very elderly patients of pre-diabetic blood results. The adjudication, of whether to inform a patient of their results, generally took place when filing blood results but sometimes during consultations. Most other GPs and nurses in our sample appear to recognise that certain patients may not benefit from being told they have pre-diabetes but, nonetheless, they still support informing them.
I: a 92 year old woman with co-morbidities and she’s got an HbA1c of 43, would you tell her?
R: Yes. Well, unfortunately, they’ll get a letter out from the surgery saying to make an appointment with the nurse. So, they would still get told, although it’s not my opinion that they always should be told, for the purpose of a referral [to the DPP]. But, I think it’s good that people should all be aware, because I’d like to know at any age. Practice nurse 3
Many clinicians maintain an approach of informing all older patients but then downplaying the significance of the result. Non-GP respondents appeared more likely to “follow the protocol” and give a full explanation of pre-diabetes, its implications, and its treatment, to all patients, regardless of age.
I: do you tell everyone that they’ve got pre-diabetes, or are there certain patients that you would not?
R: I don’t think I haven’t really. The obvious ones would be the very elderly or the people with pretty severe dementia. But even then, there is again, somebody who’s very ill, has somebody looking after them, so we would normally pass that information on. … So, you would say, well we picked this condition up, this is what it means, and you could perhaps have a look at the food that they’re eating…but equally being realistic as to what that means. GP 1
Most of the clinicians were uncertain of the benefits of “diagnosing” and treating pre-diabetes in older patients. In the main, it was felt that treating the very elderly for pre-diabetes was likely to be of limited use to the patient. Clinicians expressed having varying amounts of knowledge of pre-diabetes and of the likelihood of progression to diabetes, particularly the risks in the very elderly. There was no consistent criteria that clinicians used to grant (or not grant) candidacy to an elderly patient but factors such as co-morbidities, functional ability and life expectancy were frequently mentioned. This uncertainty about the evidence base, and the benefits of a diagnosis, created a dilemma in whether or how to communicate the diagnosis with patients.
“I think it depends on the patient, but I think the reward for telling somebody who’s over 85, say, I think are going to be lower and lower …I may play it down much more, I think, in more frail elderly patients” GP 4
In the main, clinicians worked towards minimising the impact of the diagnosis in the very elderly. They adjusted the type and intensity of advice and may have decided whether to refer on to the DPP depending on their perceived benefit to the patient. This approach appears to “tick the box” of diagnosis and having “done the job” whilst trying to impact the patient as little as possible. The patients may have a diagnosis of pre-diabetes but they were seen to be unlikely to convert this diagnosis into improved health outcomes. With younger, fitter patients several clinicians state they would be more likely to talk about the risk of progression to diabetes and discuss lifestyle changes in more detail.
The language used to describe pre-diabetes varied amongst clinicians. Some actively “diagnosed” patients with pre-diabetes whilst others avoided the phrase and tended to use phrases such as “your sugars are a bit on the high side” or “borderline diabetes”. Some varied their phraseology depending on their perceived benefit of diagnosis to the patient. Many were less inclined to discuss the progression to diabetes and potential complications in very elderly patients and where they offered referral to the DPP, were less likely to “sell” it than they would to a patient with greater perceived benefit.
“So I’ve got somebody, you know, somebody, if they’re much later in life, I’d say, you know, to some extent I would say, you’ve got this far, it’s just a matter of keeping the sugar intake down. Again, not wanting this to get, sort of, progress on more.” GP 5
The desire to avoid unnecessary anxiety or harm was mentioned by most clinicians as a reason for not informing some older patients or for “down playing” the impact of pre-diabetes.
“So I suppose I think patients do have a right to know about their health when it’s going to affect their health, but if you weigh it all up as a doctor and you think actually, this is going to cause more harm than help, because this is a 95 year old that’s really anxious and already struggling with some other medical problems … then you’ve got to think really, why would you tell that person?” GP 11
“As long as you tick the box” - policy and organisational context in the diagnosis of pre-diabetes
As set out in the introduction and in Fig. 2 the pathway to DPP referral has been constructed as a direct response to policy pressures to address rising rates of type 2 diabetes; although there are variations in pathways to referral via individual practices and practitioners. Some practices send out letters offering a place on the DPP to electronically identified patients with pre-diabetes. In some practices, CCG personnel have come into practices to run searches for patients with pre-diabetic HbA1Cs. These patients have then been sent information offering them referral onto the DPP or called into the practice to discuss their results. In some cases, these patients have not been previously informed that they had abnormal blood sugar levels. The findings from analysis of qualitative data revealed how the organisational approach to diagnosis and treatment can make it hard to treat patients as individuals that will differ in the benefit and harm they receive from a diagnosis of pre-diabetes. The exchange below from a focus group highlights the problems of individual clinicians taking a decision not to inform a patient of their pre-diabetic blood result when a practice system is in place that will automatically tell the patient.
“GP8: I have had a couple recently where I’ve thought, shall I tell them that their HbA1c is 44? No, let’s address that at a different time.”
GP9: Is that why I picked them up that say, nobody ever told me?
“GP8: Probably, yeah, when they get this letter out from the recall.”
Focus group 1
In some of the areas, practices were being financially incentivised to diagnose patients with pre-diabetes and/or refer onto the DPP. In two of the sampled practices, automated systems were put into place as a direct response to the financial incentivisation of pre-diabetes case finding. The comment below came from a GP in an area where a local scheme exists that pays practices for each patient they diagnose as pre-diabetic who has a documented BMI and receives lifestyle change advice.
“[when discussing why the clinicians in the group would still identify and assess a 95-year-old patient with dementia in a nursing home] Yeah, rather than what the patient’s age is, we’ve got to show that we are identifying these results, we are providing the health education and doing the relevant health checks for these patients.” GP in focus group 2
“A lot of other issues” -professional obligations and workload conditions
The issue of a new pre-diabetes diagnosis often comes up during review appointments for other problems, rather than during a separate appointment to address pre-diabetes. Several GPs and practice nurses felt the context in which they had to inform the patient of the result influenced whether or not and in what way they informed the patient. They were less inclined to inform and discuss the implications of pre-diabetes fully when they had other clinical priorities.
“I: an 89 year old lady that comes with a HbA1c of 43 would you refer her to the programme?”
“R1: I don’t think I would. I don’t…I don’t know, because normally that might be thrown in with a lot of other things that’s in that consultation I’d have thought. I’m just thinking of maybe the sort of ones that you pick up, you might be running a HbA1c and other bloods because of an acute presentation and actually that result isn’t something that really worries you.” GP in focus group 1
One locum GP reported that she was more likely to disclose a pre-diabetic blood result to older patients because of time pressures.
“I think if you’re very busy on a certain day, you might just see the result, you might say, right, that’s pre-diabetic, just check they don’t already know that, right, we better just call them in, you know, that, kind of, just on auto pilot, but I think on another day where you have more time, you might look more at that patient, so if you knew that patient better, if you knew what other kind of problems they had, if you knew how old they were, all those factors might play a role in whether you let them know or not.” GP 11
With care often provided by multiple professionals and automated systems, the fear amongst many clinicians is that not informing patients may generate problems in the future. Fear of complaint and medico-legal consequences were raised by several clinicians.
“…I don’t even think we’re in any position to think about, oh, is it even worth the benefit for this, because unfortunately people complain about lots of things and they can even see their own records and question it and all that sort of thing. So it’s just as easy just to be like, well, we’ve told you.” GP 7