Talking to people about their CKD diagnosis
A diagnosis of CKD can raise questions and concerns for patients. This section provides key messages and suggested language to support discussions about CKD diagnosis, prognosis, monitoring, and treatment.
Most people are born with 2 kidneys. Each kidney is made up of tiny filters. The main job of the kidney is to clean your blood, removing waste products and extra fluid by making urine. They also help in controlling blood pressure, manging blood acid levels and keep the bones healthy.
CKD stands for chronic (or long term) kidney disease. It is when your kidneys are working less than normal because of wear and tear or damage. CKD is divided in to 5 stages:
- CKD stages 1 & 2 – Mild kidney disease
- CKD Stage 3 – Mild to moderate kidney disease
- CKD stage 4 – Severe Kidney disease
- Stage 5 – Kidney failure
Most people with CKD stages 1-3 have no obvious symptoms. As a result, CKD is often identified through routine kidney health checks, including blood tests for eGFR and urine tests for uACR.
eGFR is a calculation that estimates how well your kidneys are filtering waste from your blood. It is based on your creatinine level, age, and sex. Creatinine is a waste product made by your muscles that healthy kidneys remove from the blood and pass into the urine.
A healthy young adult typically has an eGFR of around 100, although eGFR naturally falls with age. In general, the lower the eGFR, the more reduced kidney function is likely to be.
Results are often reported as >90 (“greater than 90”) or >60 (“greater than 60”), rather than an exact number. Some people think of eGFR as a percentage of normal kidney function. While this is not strictly correct, it can be a useful way to understand what the numbers mean.
Healthy kidneys act like fine filters, keeping important proteins in the blood while removing waste into the urine. When these tiny filters become damaged, they can start to leak albumin, a type of protein, into the urine.
Albuminuria means there is albumin (protein) leaking into the urine, which is a sign of kidney damage. It is measured using the uACR test. Higher uACR values indicate more kidney damage and a greater risk of heart attack, stroke, and worsening kidney disease.
Haematuria means blood in the urine. Sometimes this is visible to the naked eye, but it may only be detected by a urine dipstick test or when the urine is examined under a microscope. Blood in the urine can be caused by many different conditions, some related to the kidneys and some not. The most likely cause depends on factors such as your age, whether you are also leaking protein into the urine (albuminuria), and whether your kidney function is impaired. Further investigations may be needed to determine the cause.
For most people with CKD, the biggest health risk is not kidney failure but cardiovascular disease, including heart attack, stroke, and heart failure. This is because kidney health and heart health are closely linked. Although many people with CKD feel completely well, treatments are often recommended to reduce the risk of future problems and help protect both the kidneys and the heart.
If you have CKD stages 3a to 5, the Kidney Failure Risk Equation (KFRE) can be used to estimate the chance of your kidneys getting worse. It uses information such as your age, sex, latest eGFR, and urine ACR to calculate the likelihood of kidney failure over the next 5 years. This helps you and your healthcare team make informed decisions about how best to manage your kidney disease, including lifestyle changes, treatment options, and whether referral to a kidney specialist is needed.
The Kidney Failure Risk Equation website provides resources to help people understand kidney health, CKD management, and their risk of progression to kidney failure.
Discussing kidney failure risk should follow NICE guidance on shared decision-making and include:
- Placing the risk in the context of the person’s overall health, including comorbidities and what matters most to them.
- Using a combination of numbers and visual aids. The KFRE website includes videos designed to help people with CKD understand kidney health and their risk of kidney failure.
- Describing the likelihood of kidney failure over an appropriate timeframe using natural frequencies (for example, “10 in 100 people”) rather than percentages (for example, “10%”).