How to tell someone they have CKD

How to tell someone they have CKD

Carefully. Why?

1. Approximately 90% do not even know they have it
2. For most people, it is not a single disease in itself. It is either:
   • A risk factor (or part of ageing process) that may or may not be a warning of a more significant disease
   • A syndrome (group of diseases) with different causes, each of which have different treatments – i.e. CKD is not a diagnosis on its own. It is a syndrome like congestive heart failure (CHF) or anaemia, with a cause.

Note. It is your role as a doctor, to make a precise diagnosis and tell that to the patient. ‘CKD3A A2’ is not a diagnosis, and is confusing for the patient.

There are three major scenarios for a CKD explanation. We will now go through them.

Scenario One

89 year old lady, retired receptionist. Creatinine 89 mcmol/L and stable. GFR 57 ml/min and stable. CKD3A. PMH: TIA and breast cancer. Diagnosis = renovascular disease and ageing process. Likelihood of ERSF is minimal.

“First of all, do you know what the kidneys are and what they do?”
“No.”
“They are the bodys dustmen and filter out the rubbish and extra water in the blood, and put it in the urine. You get rid of that rubbish and water when you have a wee. You have two kidneys and they are here and here”. (point to where they are)

“Your GP has noticed that the kidneys are not working as well as they should. That can be seen by your blood and urine tests. Yes it is true that they are not 100% but they are ‘pretty good’ for your age. And crucially they are stable.”

“So. I don’t need to see you regularly. I will give him/her some advice on what tablets to use/not use, and ask for your kidney function to be checked periodically, and for you to be referred back to me if necessary.”

“Thankyou for coming to see me today.”

Theme. Very low risk scenario – i.e. no need to mention chronic kidney disease or risk factor.

Scenario Two

67 year old man, retired building site labourer. Creatinine 119 mcmol/L and rising slowly, GFR 52 ml/min (CKD3A), uACR 27 and rising slowly (low level proteinuria).  PMH: DM2 and IHD. Diagnosis – diabetic nephropathy. Likelihood of ESRF low. More likely to die with CKD.

“First of all, do you know what the kidneys are and what they do?”
“No.”
“They are the bodys dustmen and filter out the rubbish and extra water in the blood, and put it in the urine. You get rid of that rubbish and water when you have a wee. You have two kidneys and they are here and here”. (point to where they are)

“Your GP has noticed that the kidneys are not working as well as they should. That can be seen by these blood tests”. (show them data, and graph it)

“Yes it is true that they are not 100% but they are ‘not too bad’ at present. And crucially they are stable, or at least deteriorating very slowly.”

“But. The big BUT. Even though the computer says you have CKD (or chronic kidney disease), it is not really a disease at this point. It is more of a risk factor for a disease (like a high cholesterol is for heart disease) and if we handle it carefully, I doubt it will become a major issue for you.”

“So. I am going to recommend your GP starts you on a new blood pressure tablet called Ramipril, and when on the full dose of that, he/she will add another new tablet called Dapaglifozin. I know this is a complicated plan, don’t worry I will write it all down for you.”

“I will see you once again, and if stable, I will hand you back to your GP for long-term follow-up.”

“Thankyou for coming to see me today”.

Theme. Low risk (of ESRF) scenario – present CKD as a risk factor, like BP etc.

Scenario Three

31 year old woman, working part-time in a shop. 2 young children. PMH: nil. FH of CKD/ESRF, father had dialysis then a kidney transplant. Renal US shows PCKD (is aware of scan result). Creatinine 219 mcmol/L and rising slowly (creatinine 144 two years earlier), GFR 38 ml/min (CKD3B), uACR 3 (normal). PMH Caesarian Section. Medication – Ramipril. BP 157/98. Diagnosis – PCKD. Likelihood of ESRF – high. Needs handling carefully.

“First of all, do you know what the kidneys are and what they do?”
“No.”
“They are the bodys dustmen and filter out the rubbish and extra water in the blood, and put it in the urine. You get rid of that rubbish and water when you have a wee. You have two kidneys and they are here  and here. ” (point to where they are)

“Your GP has noticed that the kidneys are not working as well as they should. That can be seen by these blood tests”. (show them data, and graph it).

“I am afraid you do have CKD (or chronic kidney disease), and is due to PCKD, like your father. And you may need dialysis and a transplant later in life, like your father.” (make mental note to explain inheritance and possible effects on her children next time)

“So. I am going to recommend your GP adds another blood pressure tablet. I am confident I can slow down the deterioration in your kidney function, and do alot more for you.

We may even be able to do a transplant before dialysis. I will tell you more about (and a new dug called Tolvaptan) that next time. I will see you in 3 months time. Please have these blood tests in 6 weeks, and a few days before I see you next time”.

“Thankyou for coming to see me today”.

Theme. Moderate risk (of ESRF) scenario – dialysis and transplant likely, but in few years.

General points

To have these discussions you need:

1. To be experienced with a good bedside manner
2. Time. Don’t rush it
3. To use repetition
4. Good communication skills, e.g. use a handwritten (clear!) note for the patient and GP, followed by a easy to read outpatient letter to both.

Note. They also need to know how to contact you if they have any other questions or want to see you again.

Summary

We have described how to tell someone they have CKD. We hope it has been helpful.

Last Reviewed on 25 May 2024