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Improving quality of life in kidney disease patients: new insights from the NURTuRE biobank

A new study using information from NURTuRE by Professor Simon Fraser and Dr Thomas Phillips from Southampton University has identified factors that may reduce health-related quality of life (HRQoL) in kidney disease patients who are not yet on dialysis. All causes found by the research team are potentially modifiable, and could provide targets for medical and lifestyle interventions. 

Maintaining a good quality of life is important for everyone, but can be especially challenging for people living with chronic kidney disease (CKD). Reduced quality of life is more frequent in CKD patients and is also associated with poorer outcomes, increasing the urgency to better understand how and why this problem occurs. 

What is quality of life?

Quality of life refers to an individual’s view on how well they are, their happiness and ability to undertake different tasks, HRQoL describes the impact of illness on this. Maintaining a good HRQoL is an important treatment aim. 

There are various different ways that HRQoL can be measured for research studies, including specialised questionnaires. 

Important insights from NURTuRE

By analysing the patient information securely held in NURTuRE, Simon, Tom and colleagues found that almost 75% of patients who met the selection criteria (including not yet being on dialysis) reported reduced HRQoL. This included problems with mobility, self-care, pain, anxiety and depression. They then looked at characteristics of patients who reported reduced HRQoL in order to determine any trends or patterns, and found that being older, female gender and living with other medical conditions were linked to reductions in HRQoL. 

Importantly, the research team wanted to identify issues that could be the focus of strategies to improve HRQoL (known as ‘modifiable risk factors’) and spoke to patients to ensure that they understood their beliefs and experiences on this. Tom/Simon commented: ”By working closely with a panel of patient advisors we were able to identify risk factors that they felt could be successfully targeted, either through lifestyle changes or different approaches to treatment. It was important to take this approach to ensure that our research findings could be directly applied to kidney patients, and we would like to thank everyone involved for their support”. 

Supporting patients in the future

Potentially modifiable factors found to be linked with patients having poorer overall HRQoL included limited understanding of their medical conditions, being on ten or more different regular medications (known as ‘polypharmacy’), taking certain types of medicines, reduced muscle mass, certain mental health conditions, changes in some blood test results and higher body mass index. Importantly, the team also found that taking a type of medication called renin angiotensin system inhibitors was linked to improved HRQoL. Simon/Tom added “Living well with CKD is challenging, and as well as managing kidney problems it is important to consider well-being and HRQoL. NURTuRE has allowed us to pinpoint some of the factors that could be modified in order to benefit this vulnerable population." 

Because NURTuRE has been following people up over time, the team will next investigate how HRQoL changes for people with CKD over several years. If it has got worse for some of the patients, Simon and Tom will explore the things that might have caused that, providing valuable insights into future strategies to prevent these problems in patients living with kidney disease 

Michael Nation, director of NURTuRE at Kidney Research UK commented: “NURTuRE simply wouldn’t have been possible without the generous support and participation of patients living with kidney disease. We are delighted to share these early results which clearly demonstrate the potential for NURTuRE to support this community; I’d like to thank Tom, Simon and everyone involved in the study, and look forward to the next set of results”. 

About NURTuRE

NURTuRE securely holds information and biological samples (such as blood and urine) from patients living with different types of kidney disease in the UK, providing a unique resource to support important new research. To date, patients diagnosed with chronic kidney disease (CKD) and idiopathic nephrotic syndrome (INS) have been included in NURTuRE, with acute kidney injury (AKI) the next area of interest. 

The NURTuRE team collected and securely stored biological samples from approximately 3,000 patients with CKD and plan to include up to 800 patients with idiopathic nephrotic syndrome (INS). This type of collection of samples for research is known as a ‘biobank’. In addition to samples of blood, urine, DNA and body tissues, NURTuRE includes baseline data on patients (such as age) and will link to long-term clinical (healthcare) data through the UK Renal Registry and NHS Digital. The information in NURTuRE will support crucial new research, offering hope to many patients living with kidney diseases. 

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