Kidney health

Sources of information

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 for people to say they had been given only a brief explanation of their kidney impairment, alongside being told it was typical for someone of their age and nothing to worry about (see ‘The words doctors used to explain kidney impairment’). Some didn’t realise that their kidney performance was impaired or that it was being monitored. This reluctance of some doctors to give information about kidney impairment is probably because they wish to avoid alarming patients about a condition that is unlikely to cause them any problems (see ‘Why is kidney health important?’ and ‘How and why is kidney function monitored?’).
Among those who had been told details of their kidney performance – either the stage of chronic kidney disease (CKD) (a number from one to five where five is worse kidney performance) or the estimated glomerular filtration rate (eGFR) (a number ranging from 1 to 90 or more where a higher figure means better kidney performance) – some said they didn’t really understand what it meant. A few had been given a graph showing changes in their eGFR over time, which they found more understandable than being told a single figure at one point in time. See ‘How and why is kidney function monitored?’ for a more detailed explanation of CKD stages and the eGFR.
Although there are leaflets about early stage chronic kidney disease written for patients (see resources section) it was rare for the people we spoke to have been given one, whereas they were used to being given leaflets about other medical conditions or picking them up in their doctor’s surgery. A few recalled being given a leaflet when they were first referred to a kidney specialist. Bill had been sent one by his GP with the invitation to take part in this interview.
People recalled various specific bits of information about kidney disease they had learned from a health professional. Laura’s GP had told her seventeen years ago that there was a one-in-three chance of her kidneys failing within ten years and had put her in touch with one of the kidney charities. Lesley and Simon had been told by a GP that their kidney impairment had been caused by long-term use of a prescription drug (see ‘Awareness of kidney disease and beliefs about possible causes’). Jackie has had kidney disease since childhood and was warned by her GP that it could lead to a problem with her bones. Tony’s kidney specialist drew a diagram to show how a vessel connected to one of his kidneys had narrowed.
Lifestyle had often been mentioned by a doctor or nurse, and several people, particularly those who had diabetes, said they had been given information about recommended dietary changes. People may be referred to a dietitian for more detailed advice but Lesley found the dietitian’s advice contradicted what she had found on the internet for people with kidney disease. A pharmacist had given Xanthe dietary information tailored for people with kidney problems.

Not everyone wanted much information about their kidney impairment and preferred to trust the professional’s judgement of what they needed to know. A few said they would ask for more if they felt a need. Robert said he didn’t want to take up the doctor’s time. Jill, aged 77, said that she would probably want more information if she was younger. Harry and Pat felt that too much information could be damaging.
Information from books, the internet or the kidney charities could all be useful. Sarah learned from one of the charities that people with kidney problems should avoid using non-steroidal anti-inflammatory medicines, such as ibuprofen, for long term pain relief. Xanthe was sent a booklet of exercises from one of the kidney charities.
Nowadays, most people use the internet to look for information on a wide range of topics including health issues. Some people we spoke to had used the internet to look up information about kidney impairment, while others had used it for other medical conditions but not so far for their kidney health. Peter had looked up information about the medicines he was taking and how other people experienced the side effects; Martin had looked for information about atrial fibrillation. Joanne had searched for information on kidney disease and had found nothing that caused her to worry about her condition. Mike learned that high blood pressure could be linked with kidney impairment and that it was possible to live normally with the equivalent of only one kidney. Lesley had looked for symptoms of kidney disease and dietary guidance; she also found a private kidney specialist. Justine had looked up information about what having a kidney biopsy involved before having one herself.

The quality of online information was a concern, and some people recommended only visiting reputable websites, such as NHS Choices or Patient.co.uk, in order to obtain reliable information. People could sometimes regret looking online if they found information they had not wanted or which disturbed them.
Many people we spoke to who had not sought out information for themselves had questions about their kidney condition that they wanted answering (see ‘People’s ongoing information and support needs’).

For factual information about early kidney impairment see ‘Resources’ section.
 

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