Innovative questionnaire reveals most common symptoms reported by people with kidney disease

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: https://onlinelibrary.wiley.com/doi/10.1111/jorc.12247

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 centered on the person."