Kidney symptom questionnaire: development, content validation and relationship with quality of life

Posted by ap507 at Sep 04, 2018 02:18 PM |
Professor Alice Smith leads new research developing questionnaire which measures the frequency and importance of the most common symptoms reported by people with kidney disease who do not need dialysis or a transplant

Think: Leicester does not necessarily reflect the views of the University of Leicester - it expresses the independent views and opinions of the academic who has authored the piece. If you do not agree with the opinions expressed, and you are a doctoral student/academic at the University of Leicester, you may write a counter opinion for Think: Leicester and send to

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 response to this need, the Leicester Kidney Lifestyle Team have worked with kidney patients to design a short and simple questionnaire which measures the frequency and importance of the most common symptoms reported by people with kidney disease who do not need dialysis or a transplant. Together, the kidney patients and researchers discussed which symptoms should be included in the questionnaire 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. 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. This is an important and overlooked aspect of clinical research, which has often focussed on the process and underlying cause of disease, rather than its impact on the patient.




Share this page: