New tool to help people with kidney disease track their symptoms more easily
In a paper published in the Clinical Kidney Journal, Professor Derek Kyte and a team of researchers, with support from a Kidney Research UK-Stoneygate research project grant, have developed and validated a new questionnaire. It aims to help people with chronic kidney disease (CKD) report their symptoms more easily and effectively.
Why symptom monitoring matters
For people living with CKD, symptoms can vary widely and change over time. Regularly tracking these symptoms helps patients better understand their condition and communicate more effectively with healthcare professionals. This can lead to earlier interventions, improved quality of life, and more personalised care that focuses on what matters most to each individual.
Understanding patient experiences can provide important information to help optimise CKD management
The current monitoring of CKD symptoms is gathered though questionnaires called Patient-Reported Outcome Measures (PROMs). However, this measurement requires the completion of multiple and often lengthy questionnaires which may lead to lower levels of completion.
Additionally, many CKD-specific PROMs lack coverage of symptoms that are most important and problematic for patients and are not accessible for adults across different CKD stages.
Professor Kyte and a team of researchers across the UK and EU reviewed symptom and quality of life data from almost 200,000 patients globally, to explore how this information might help support patient management. This review provided a detailed account of the symptoms experienced by patients with CKD and how their quality of life is affected by CKD stage and treatment.
They used this knowledge to develop and test a shorter PROM called the Kidney Symptom Burden Questionnaire (KSB-Q).
How can we measure the CKD symptoms that are most impactful to patients?
The Kidney Symptom Burden Questionnaire (KSB-Q) has 9 questions designed to capture the most common and burdensome symptoms experienced by people with CKD, including those not on dialysis, those receiving dialysis, and kidney transplant recipients. The KSB-Q takes around 5 minutes to complete, was tested in over 400 people living with CKD for use across diverse CKD populations and is designed for both care and research settings.
The KSB-Q focuses on nine key symptom areas:
- Fatigue
- Pain
- Memory/concentration issues
- Poor sleep
- Skin problems
- Gastrointestinal issues
- Dizziness
- Restless legs
- Shortness of breath
An important tool for the future
This work supports more person-centred approach to kidney care by enabling patients to better track and manage the symptoms that matter most to them. As the KSB-Q form is short and easy to complete, for clinicians, this may provide a more robust tool to be used alongside existing care measures.
Professor Kyte and the team are collaborating with researchers from the University of Leeds to develop a computer-adaptive testing (CAT) version of the questionnaire to further personalise and streamline symptom monitoring which includes addressing mental health.
What is computer adaptative testing and what does it mean for patients?
Computer adaptive testing (CAT) is a digital questionnaire that adapts to each person’s responses, making it quicker and more personalised.
Hope for more person-centred care
“We want to support healthcare professionals and patients in the management of symptoms that impact them the most so that we can better understand and target care. This questionnaire provides a simple way of measuring patient symptoms for short-term and long-term use, across any stage of a patient’s journey.
We are now beginning phase 2 of the project to further refine this tool digitally, with the hope to reach the clinic in the future.” Professor Derek Kyte.
“We are keen to see this research progress and be used to support a more equitable approach to care, ensuring tools like this are effective and inclusive for patients from all backgrounds, especially those underrepresented in healthcare.” Tracey Murray, Director of programmes at Kidney Research UK.
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