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Improving quality of life in CKD: what can we learn from patient experiences?

18 October 2022

A team of researchers across the UK and EU have reviewed symptom and quality of life data from almost 200,000 patients globally, to explore how this information might help support patient management.  

Quality of life remains a major concern for those living with CKD

Around one in ten people worldwide live with chronic kidney disease (CKD). Having CKD increases the risk of developing other conditions, such as diabetes and heart problems, which can lead to a progressive reduction in individuals' quality of life.  

Young man with head in his hands
Photo by Doğukan Şahin on Unsplash

Monitoring patients’ symptoms and quality of life can help improve management, by supporting prompt identification and treatment of any problems that may arise. However, there is a knowledge gap around which symptoms are most important to patients: for example, which issues are experienced most often, or are most severe? There is also uncertainty around how patients’ quality of life is affected at different stages of CKD.  

Improving our knowledge of symptoms and quality of life could play an important role in enhancing patient care. 

Kidney Research UK and the Stoneygate Trust are supporting crucial research into quality of life

With support from a Kidney Research UK-Stoneygate research project grant, and in collaboration with researchers across the UK, EU and US, Dr Derek Kyte from the University of Worcester looked to address this knowledge gap.  

Dr Kyte and his team reviewed over 400 scientific papers including details from almost 200,000 patients across 62 countries. The research team gathered information regarding CKD stage, estimated glomerular filtration the presence of other chronic conditions (comorbidities), details about age, gender and patient-reported symptoms and quality of life. Where available, this information was also gathered from non-CKD populations, for comparison.  

Data analysis revealed that, depending on the stage of their CKD and the renal replacement therapy received (dialysis or transplantation), patients reported a range of different symptoms. The most common symptom was fatigue, but patients also reported poor mobility, bone or joint pain, drowsiness, poor sleep, itching, dry skin, swelling in legs and many others. The burden of symptoms increased as CKD advanced. When compared with people without CKD, those with the disease had a lower quality of life, linked to the symptoms that they experienced.  

Results also showed that patients who had received a kidney transplant had fewer and less severe symptoms, resulting in an improved quality of life, both when compared with those on dialysis, and also those with a CKD diagnosis but not yet receiving dialysis. It is important to note, however, that although quality of life was improved in transplant patients, in general it was not restored to the levels seen in individuals without CKD.  

Looking to the future

This review has 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. The findings can now help healthcare professionals better plan patient care and monitoring. 

Dr Kyte said: “We want to be able to consistently monitor patients’ symptoms and quality of life in between their clinic appointments. This helps clinicians take action straight away if their patients are struggling. Our review has given us vital information to help us ensure we measure the CKD symptoms that are most impactful to patients. We also now know much more about how quality of life is affected at different stages of the disease, meaning we can target care to those most in need.”

Kidney Research UK’s Executive director of research and policy, Dr Aisling McMahon, explained: “As a research charity, we are committed to funding high quality studies supporting improvements in the health of kidney patients and this includes improving quality of life. Derek’s research provides key information to help kidney health professionals focus on helping to manage and relieve symptoms that most impact patients.”

Read the full paper to find out more about the research. 

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