Most common symptoms reported by people with kidney disease

Posted by ap507 at Sep 04, 2018 09:46 AM |
Leicester researchers develop Kidney Symptom Questionnaire which will be used by healthcare professionals across UK

Issued by University of Leicester on 4 September 2018


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Observational Study



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A team of researchers from Leicester has developed an innovative questionnaire which helps to shed light on the most common symptoms reported by people suffering from kidney disease.

The Kidney Symptom Questionnaire, developed by the Leicester Kidney Lifestyle Team at the University of Leicester and Leicester’s Hospitals, measures the frequency and importance of the most common symptoms reported by people with kidney disease who do not need dialysis or a transplant.

The questionnaire and the research involved in developing it has been highlighted in a paper published in the Journal of Renal Care:

The top 13 symptoms chosen by kidney patients - who are not on dialysis or transplanted - as the most important to them are:

  1. Excessive tiredness
  2. Needing to urinate often
  3. Sleep disturbance
  4. Muscle cramps and stiffness
  5. Loss of muscle strength/weakness
  6. Pain in bones and joints
  7. Feeling cold
  8. Itching
  9. Shortness of breath

10. Poor concentration

11. Restless legs

12. Impotence/loss of libido

13. Poor appetite

Professor Alice Smith, Honorary Professor (Lifestyle Medicine) at the University of Leicester and Senior NHS Researcher and Team Leader, Leicester Kidney Exercise Team, at Leicester's Hospitals, 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, the remainder live with kidney function that is lower than normal and causes 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. In 2013, a joint report* by kidney patients, healthcare providers and kidney charities was submitted to the House of Lords with a series of recommendations for the future of kidney care in the UK. One of the top priorities identified by kidney patients was improved monitoring and treatment of their symptoms, which they felt was a neglected area.”

In developing the questionnaire, patients and researchers discussed which symptoms should be included and what words should be used to describe them so that everyone 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 results 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, followed by difficulty sleeping, muscle weakness, cramps and stiffness, pain in the bones and joints, and feeling cold,” Professor Smith explained. “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 researchers.

It can be used to identify which symptoms a patient suffers from, and to initiate appropriate discussions with healthcare 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.

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 national patient support 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.”

Research by Leicester Kidney Lifestyle team is supported by the National Institute for Health Research (NIHR) Leicester Biomedical Research Centre, a partnership between Leicester’s Hospitals, the University of Leicester and Loughborough University.


Notes to editors:

For more information contact Professor Alice Smith on

The NIHR Leicester Biomedical Research Centre

The National Institute for Health Research (NIHR) Leicester Biomedical Research Centre (BRC) is a partnership between University Hospitals of Leicester NHS Trust, the University of Leicester and Loughborough University. It is funded by the National Institute for Health Research (NIHR).

The NIHR Leicester BRC undertakes translational clinical research in priority areas of high disease burden and clinical need. These include cardiovascular disease, respiratory disease, and lifestyle, obesity and physical activity. There is also a cross-cutting theme for precision medicine. The BRC harnesses the power of experimental science to explore and develop ways to help prevent and treat chronic disease. It brings together 70 highly skilled researchers, 30 of which are at the forefront of clinical services delivery. By having scientists working closely with clinicians, the BRC can deliver research that is relevant to patients and the professionals who treat them.

The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research.

Established by the Department of Health and Social Care, the NIHR:

  • Funds high quality research to improve health
  • Trains and supports health researchers
  • Provides world-class research facilities
  • Works with the life sciences industry and charities to benefit all
  • Involves patients and the public at every step

For further information, visit the NIHR website (

This work uses data provided by patients and collected by the NHS as part of their care and support and would not have been possible without access to this data. The NIHR recognises and values the role of patient data, securely accessed and stored, both in underpinning and leading to improvements in research and care. Read more:

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