Attitudes towards monitoring kidney health
We asked the people we spoke to what they thought were the positive and negative aspects of having regular monitoring of their kidney health. People...
The words doctors used to explain kidney impairment
The language that doctors used to tell people about their kidney impairment varied widely. A few people we spoke to had been told that their condition was referred to by doctors as Chronic Kidney Disease (CKD). The term ‘chronic’ is often misinterpreted as meaning serious whereas it actually means long-term. Some doctors prefer to think of kidney impairment as a risk factor for other conditions and a ‘barometer ‘of general health rather than as a disease, and therefore avoid using this label when talking to their patients.
Having only recently learned of his kidney disease, Eric finds it hard to understand how it can be referred to as chronic. This term also makes it sound more serious than it is.
A few people knew that their stage or level of CKD was 3 on a scale of 1 to 5, and some had been told a specific figure for their kidney performance, such as 53 or 40 (sometimes described as a percentage), although not everyone knew that this figure was called the estimated Glomerular Filtration Rate (eGFR) (see ‘How and why is kidney function monitored?‘).
Gerald had been told his kidney function was at level 3 out of 5, and was quite acceptable for his age.
More commonly, people did not remember having their kidney condition discussed using these terms, but instead had it explained in euphemisms, such as their kidney performance was ‘borderline’, ‘a bit low’, ‘decreasing’, ‘satisfactory but not good’, or ‘not as good as it should be’. Some were told that their kidneys were performing as if there was only one of them, not two. Jim B’s kidney impairment had been diagnosed before the term CKD was introduced; he was told he had a ‘damaged kidney’.
Russell’s GP usually tells him that his kidney test results are all clear’ and doesn’t discuss them in detail with him.
Jackie learned her eGFR when she saw a letter written by her kidney specialist; before then she had been told she had the function of one and a quarter kidneys. Recently her function has reduced from 49 to 40 percent.
People were often told that it is common for kidney function to decline as people age and that their level of kidney performance was typical for their age group and nothing to worry about. Martin’s kidney performance was lower than expected for his age of 70 and was told that his kidneys were ‘ten years older than him.’ Flo was told her kidneys were showing signs of ‘wear and tear’ and were leaking protein into her urine.
Eric accepts his GP’s explanation that kidney function may decrease as you get older, because he is aware that other aspects of bodily function also decline with age.
Increasing age was the most common explanation for their kidney impairment offered to people we spoke to. A few were told it might have been caused by certain prescription medicines they had taken for a long time or by having high blood pressure (see ‘Awareness of kidney disease and beliefs about possible causes‘).
Being told not to worry about slightly impaired kidney performance is clearly intended by health professionals to be reassuring. It was common for people to say that they had felt reassured that their kidney impairment was not something they should worry about at the present time. Reassurance came from knowing that their kidneys were still functioning sufficiently to not cause them any problems, that they were being regularly monitored and that their test results were satisfactory or stable, and by trusting their doctors when they told them they were not concerned.
Royston Y was reassured by a nurse that just because he was taking part in research about kidney health didn’t mean there was anything wrong’ with his kidneys. He suggests that other people should not worry about kidney monitoring either unless there was
Kath was told that as long as she kept off the drug that had caused her kidney impairment she should be able to live with it. She felt reassured that she could put this to one side and concentrate on other health problems.
Unfortunately in Jim B’s case it was false reassurance because after being told his kidney performance had stabilised he had not realised that it was still being monitored or had become a cause for concern until he was told it had reached dangerous levels. A GP in the practice claimed he had told Jim B about his CKD earlier but Jim B has no recollection of it.
However, the explanation given, and being told not to worry, was not always enough to reassure people. This was more likely to be the case among people who felt a need for more information about the condition than they had been given or those who had had a family member with kidney failure. Xanthe and Anne said they had been told that they might need dialysis at some point in the future, and this may also have been intended to reassure them that treatment would be available if their kidney performance were to decrease to a dangerous level. However, they were shocked to hear the word ‘dialysis’ when they were first told of a decline in their kidney function.
For more about people’s reactions to the diagnosis see ‘Thoughts and feelings at diagnosis‘.
Elizabeth didn’t find it reassuring to be told that plenty of people can live with one kidney, because she wanted an explanation of why her kidneys were not working as well as they should.
Flo had been told that her kidneys were showing signs of wear and tear but not to worry. But she said that being told, Don’t worry’, actually caused her to worry.
Xanthe only has one kidney so felt scared when told it was not functioning properly but if it failed she could be given dialysis. Knowing dialysis was available was only slightly reassuring.
Many said they would like more information from their doctors about the condition and what they can do to help themselves; some said they expected their doctors to be honest and open with them. Flo and her husband Fred suggested that doctors need to always remember that it can be frightening for a patient to be diagnosed with a medical condition. It was suggested that doctors should listen to patients more when talking to them so as to be aware of what things concerned or frightened them, and to take care to put them at ease and not panic them. Others said that being able to see the same GP repeatedly would build stronger doctor-patient relationships; this could help GPs to know their patients better, enabling them to better judge their information needs and preferences, and give patients more confidence to ask questions. (See also ‘When should doctors inform people of a mild kidney impairment?‘).
Ken thinks that after being told they have a chronic condition people should be told about it in more detail by their doctor, but realises that the patient could also go back to ask questions later.
Tina suggests that doctors should listen to their patients more and ask them how they are feeling about their health problems or what they’ve been told.
It was widely acknowledged that GPs are very busy and have limited time in each consultation to explain things to patients. Some people we spoke to offered suggestions for how doctors could provide further information about kidney impairment and the need for regular monitoring but without causing anxiety. Ken and Sarah thought follow up consultations to learn more about their kidney impairment would be helpful. Harry and Nell would value more feedback about test results in simple language. Jackie Z suggested that she wouldn’t be frightened by receiving a standard letter explaining that over a particular age certain tests would be done regularly to try to prevent ill health.
Sarah learned about her CKD in a casual GP appointment where time was limited and she did not feel reassured. She would have liked the GP to suggest a follow-up consultation to discuss it in more detail.
Sources of information on kidney health
Verbal explanations from doctors and nurses were the main source of information about kidney impairment among the people we spoke to. But it was common...