Kidney health

People’s ongoing information and support needs

We asked people we spoke to what they had wanted to know about having a mild kidney impairment once they had reflected on their diagnosis. People’s information needs fell into three categories:

•    what they could do to prevent their kidney health from becoming worse;
•    causes, symptoms and treatment options if their kidney health should deteriorate; and
•    help with understanding the clinical measures of kidney health (see also ‘Receiving and making sense of test results’).

Some people, such as Bill, hadn’t thought much about their kidney health before taking part in an interview, but said that the process of talking about it had made them realise that there were questions they would like to seek answers to when they next saw a health professional.
Others had sought answers to their questions but had been surprised by how little information seemed to be available directly from their GP. Lesley and Sarah felt that their GP didn’t want to talk about chronic kidney disease in much detail with them. Ken had gone online to find information but had felt more concerned by what he had found and decided he would ask his GP to explain to him if he could do anything to prevent his kidneys getting worse. (See also ‘Sources of information’.)

People recognised that getting information from health professionals is a ‘two way street’ and that sometimes people’s information needs around kidney health had not been met because they had not asked questions during a consultation. Pat commented that appointments could feel time-pressured, especially if there were a lot of other health issues to discuss alongside kidney health. Some people also said that they just weren’t ‘the type’ or did not feel confident enough to ask questions of a doctor.
Information on how to maintain good kidney health

A mild kidney impairment is common amongst older adults, so there was surprise about the small amount of written information on kidney health available from GP surgeries. There were a lot of questions about what people could do to help themselves, for example diet and whether eating particular foods might help to support kidney health. It was common for people to say that they would be willing to adjust their diet if it could help their kidney health (see also ‘Lifestyle changes’).
Lesley was convinced that changes she had made to her diet had made a difference to her well-being but found her GP reluctant to talk about this topic.
There was awareness that appropriate intake of fluids is important to support kidney health. However, there was wide-spread uncertainty about how much fluid was ‘the right amount’ for people’s individual circumstances and whether the recommended amount of daily fluid intake included tea, coffee or alcohol. How much alcohol was safe to drink with a kidney impairment, and whether alcohol was a contributing factor in kidney disease, were common concerns.
A few people said they hadn’t so far considered seeking out information specifically about maintaining kidney health. Martin felt confident that if he ever needed more specific information he would be able to find it online.
Information on causes, symptoms and treatment options

There were a number of unanswered questions concerning possible causes of people’s own kidney impairment (see also ‘Awareness of kidney disease and beliefs about possible causes’). Some had been told that their kidneys had been damaged by medication, whereas others suspected this to be the case but had not actually discussed it with their doctor. Simon had been told that the lithium he had taken since he was a teenager would have affected his kidneys. People with family members who had also experienced kidney problems often wondered about the existence of a genetic vulnerability in causing kidney impairment.

It was not unusual for people to worry about the possibility of dialysis when they were first told about their kidney impairment (see also ‘Thoughts and feelings at diagnosis’). There was a lesser degree of awareness of a mild kidney impairment as a risk factor for heart disease and stroke. Sometimes health professionals had been able to overcome people’s anxieties about dialysis and transplantation, but sometimes people said they had been too frightened to ask about their long-term prospects and possible treatment options. Anne and Joan wanted to know if there were any symptoms to look out for that indicated their kidney function was becoming worse.
(See also ‘Beliefs about kidneys and the causes of kidney disease’ and ‘Expectations, hopes and concerns for the future’).

Help with understanding clinical measures of kidney health

People who had other long-term conditions, such as diabetes or heart disease, often commented on the minimal feedback and explanations they received about their kidney test results compared to other tests. However, others described their kidney health very much as a background issue and did not feel the need for more detailed feedback on test results. Some people admitted that they did not really understand the meaning of detailed figures or stages of chronic kidney disease (CKD) that health professionals had mentioned to them but did not feel concerned about this.
Some people who wanted more feedback on their test results said they wanted to know what the numbers meant. Joanne and others said they liked numbers and were interested to keep track of how their kidney function might develop over time.
Others did not want figures, but just more personalised information about what their results might mean for someone their age and with their individual medical history. For example, Royston Y, aged 82, wanted to know whether despite his mild kidney impairment he could still consider his general health as ‘good’ for someone of his age. (To read more about people’s experiences of getting feedback on test results, see ‘Receiving and making sense of test results’.)

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