Tests used to monitor kidney health
Repeated blood and urine tests at regular intervals are used to determine whether a person's kidney performance is stable, improving or worsening, based on levels...
Receiving and making sense of test results
Blood and urine samples are sent to a hospital pathology laboratory for measurements of kidney performance and other factors. Results are reported back to the doctor within a few days but the means by which the patient receives the results varies, which meant that some people we spoke to waited a week or two to get their results.
Many people said they usually phoned or visited the GP surgery to ask about their results but Kath and Joanne said it was easy to forget.
After having tests done at her GP surgery Anne waits about a week before phoning up to find out about the results.
Joanne usually phones up for her test results about 3 days afterwards but she sometimes forgets; however, she recognises that sending results by post instead could cause anxiety.
Jackie said she preferred to phone up rather than wait for the general practice to act because she had experience of mix-ups in the past where messages about test results had been given to the wrong patient. Some people who had been seen by secondary care specialists also thought it was helpful to keep copies of communication between GPs and consultants to make sure information did not get lost in transit. Sarah and Laura said they ask for a printed copy of their test results.
Harry thinks while there is a danger that too much information might cause people to over-worry, it is useful to take an active interest in ones check-ups to prevent loss of information and miscommunication.
Sarah thinks it’s a good idea for patients to keep copies of their medical notes and test results and thereby take responsibility for their own health.
David, Gerald and Xanthe said their doctor would phone them to tell them the results. Others would wait for their next appointment at the GP surgery to get their results – if the appointment was not too far ahead – or they would make an appointment specifically to get the test results. Donald said he had to do this because his practice would not give results out over the phone. Bernard learned his most recent test results during a home visit from his GP.
Xanthe feels she is lucky with the service she gets from her local GP surgery because they are likely to phone her whether the test results are normal or abnormal.
Donald has to wait a long time to get his test results in person at his next GP appointment because the practice won’t give them out over the phone. He would prefer to get them sooner.
Many people we spoke to said that they rarely or never found out the results of routine tests done by their GP but assumed that if they heard nothing it meant that there had been no significant change in the measurements over time and that no action was needed. It was commonly recognised that general practices were extremely busy and that phoning everybody who had satisfactory test results would add unnecessarily to their workload. While a few people said they would prefer to be told their results, most trusted that their doctor would contact them if there was a problem that needed to be dealt with. The following comment from Elizabeth was typical: ‘I think no news is good news sometimes, don’t you, because I think if there was anything wrong they’d soon get in touch’. Some thought that taking too much of an interest in one’s health could in itself become a source of ill health. Margaret, aged 72, said she belonged to a generation that assumed doctors knew what they were doing and had learned not ask too many questions of people in authority.
Russell says he doesn’t expect his doctor to tell him his test results if there is nothing to adjust; he takes it for granted that all is well.
Ian is happy to leave it to the discretion of his GP as to when he would need to be informed about a decline in his kidney function.
James works on the principle that no news is good news. He is not too concerned to know the details of what he is being tested for.
Results of INR (International Normalised Ratio) tests were usually phoned through to the patient and sent in writing because the results determined what dose of warfarin the patient should take for the next few weeks until their next scheduled test.
People who had tests done in hospital were used to either learning the results straight away in person from a health professional or receiving results by letter afterwards. Flo said that having results in writing was a useful record that she could refer back to.
Mike explains what happened when he was having check-ups at the hospital renal clinic and that he appreciated learning his test results straight away.
Mike and John wondered whether in future it might be possible for people to access all their test results over the internet. This is already possible for people having checks at hospital renal clinics that have registered with patientview.org. For instance, Simon was having check-ups at hospital as well as with his GP and explained that he could access his kidney function test results via that website.
Simon can’t remember the exact level of his kidney function but he can access a website where all his results are stored as a record for both him and his specialist.
When receiving test results, people would often be told specific values for levels of cholesterol or blood sugar, but few said they had been given any details about their kidney performance test results. Commonly people were told that their test results were: ‘fine’, ‘satisfactory’, ‘good’, or there had been ‘no change’. Some had been told their results were ‘normal’ or that there was ‘nothing wrong’ even though they had a small reduction in kidney performance. This may be because GPs want to avoid causing any anxiety about mild kidney impairment that isn’t causing any symptoms and is unlikely to worsen (see ‘Why is kidney health important?‘ and ‘How and why is kidney function monitored?‘).
Jim is diabetic and has regular blood tests; although he realises that lots of different things are measured in his blood he is only told the blood sugar level.
When David’s kidney function was first found to be impaired he was told it was satisfactory but not good’; it has since improved and is now wavering between satisfactory’ and good.
Joanne doesn’t know exactly what level her kidney function is at, and whenever she asks for her test results she is just told they are satisfactory.
Others had been told something about their kidney impairment, either when it was first diagnosed or when discussing routine test results. For instance sometimes the term ‘chronic kidney disease – CKD’ was mentioned, and which stage theirs was, or a figure or percentage for their specific level of kidney performance (the estimated Glomerular Filtration Rate – eGFR), or the level of the waste product creatinine in their blood. Tony and Justine had been shown a graph of their changing eGFR over time. However, not many understood how many stages of CKD there were, or what the scale for the eGFR was, and what stage or level represented a problem. Mike wondered whether his kidney function had returned to normal because he had been repeatedly told that his routine test results were satisfactory. Others had been told they had blood or protein in their urine but not why that was significant.
Although Mike suspects he was originally told details of his kidney performance he cannot remember any specific values and doesn’t understand whether he still has a kidney problem.
Martin’s GP had explained a bit about what the levels of kidney function mean and told him that his eGFR of 59 was nothing to worry about but that his kidneys were about 10 years older than you.
David and others told us they were happy with the little information they currently had about their kidney function level and did not want to know more or risk becoming confused by being given information they couldn’t understand.
David has a blood test every 3-4 months to test his kidney function and his GP phones afterwards and tells him the result is satisfactory. He is happy to be told no more than that.
However, it was common for people to say they wanted to know more but often felt unable to ask; they hoped that being better informed might help them to manage their condition and prevent it from worsening. Harry wanted to rule out the possibility of his results being mixed up with those of other patients. However, several thought it was unrealistic to expect their GP to spend more time with them explaining things because they were so overworked.
Pat is frustrated by the lack of information about her test results and feels that her GPs are not interested in her; she has felt unable to ask questions in the past.
For more about people’s information preferences see ‘The words doctors used to explain kidney impairment‘, ‘Sources of information‘, and ‘People’s ongoing information and support needs‘.
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...