A team of researchers from Leicester has developed a questionnaire that they say helps to shed light on the most common symptoms reported by patients with kidney disease.
Their results have highlighted the 13 most common and troublesome symptoms experienced by people with non-dialysis kidney disease.
“Feeling tired and needing to urinate often were the most important symptoms”
The Kidney Symptom Questionnaire measures the frequency and importance of the most common symptoms reported by people with kidney disease who do not need dialysis or a transplant.
It was developed by the Leicester Kidney Lifestyle Team at the University of Leicester and University Hospitals of Leicester NHS Trust Leicester.
In developing the questionnaire, patients and researchers discussed which symptoms should be included and what words should be used to describe them so all could understand and agree on their meaning.
The questionnaire was then checked and approved by expert kidney care professionals from across the UK.
Finally, the research team asked 70 kidney patients to fill in the Kidney Symptom Questionnaire alongside the EQ5D-L, a questionnaire which measures health-related quality of life.
The findings, published in the Journal of Renal Care, revealed the top 13 symptoms chosen by kidney patients – who are not on dialysis or transplanted – as the most important. They are as follows:
- Excessive tiredness
- Needing to urinate often
- Sleep disturbance
- Muscle cramps and stiffness
- Loss of muscle strength/weakness
- Pain in bones and joints
- Feeling cold
- Shortness of breath
- Poor concentration
- Restless legs
- Impotence/loss of libido
- Poor appetite
Study author Professor Alice Smith said: “Chronic kidney disease is a long term condition affecting up to 5 million people in the UK. About 10% of these have total kidney failure and need regular dialysis or a kidney transplant.”
However, she noted that the remainder lived with kidney function that was lower than normal and caused a range of troublesome symptoms.
“To date, there has been little research into these symptoms and many patients find there is a lack of advice and support available to manage them,” she said.
“This is an important and overlooked aspect of clinical research”
Professor Smith highlighted that a 2013, a joint report was submitted to the House of Lords with a series of recommendations for the future of kidney care.
One of the top priorities identified in the Kidney Health Delivering Excellence report was improved monitoring and treatment of their symptoms, which patients “felt was a neglected area”, she said.
“Feeling tired and needing to urinate often were the most important symptoms, followed by difficulty sleeping, muscle weakness, cramps and stiffness, pain in the bones and joints, and feeling cold,” said Professor Smith.
She added: “Patients reporting more symptoms or frequent symptoms had lower quality of life scores, showing that measuring and managing symptoms is important for the wellbeing of people with kidney disease.”
The Kidney Symptom Questionnaire is now available for use by healthcare staff and other researchers. It can be used to identify which symptoms a patient suffers from, and to initiate appropriate discussions with staff.
It can also be used to monitor changes in symptoms over time, for example, to evaluate the effectiveness of treatments or indicate when a different approach to symptom management is required.
“I am delighted to see that Professor Smith and her group have gone on to develop a way to highlight symptom burden”
Meanwhile, in research, it can measure the effect of new treatments on the patient experience of their kidney disease.
Professor Smith added: “This is an important and overlooked aspect of clinical research, which has often focused on the process and underlying cause of disease, rather than its impact on the patient.”
Fiona Loud, policy director of charity Kidney Care UK, said: “As a co-author of the Kidney Health Delivering Excellence report I am delighted to see that Professor Smith and her group have gone on to develop, with patients, a way to highlight symptom burden, increase understanding of the challenges of CKD and the ability to deliver care which is centred on the person.”