Understanding health-related quality of life and its impact among people with chronic kidney disease

11 May 2022

With our funding, Dr Simon Fraser from the University of Southampton, will study factors that might impact health-related quality of life in patients with chronic kidney disease (CKD) who are not yet on dialysis.

Early stages of CKD and quality of life

CKD is a common, long-term condition affecting about one in ten adults in the UK. It can vary from a mild condition with few or no symptoms, to a serious condition where the kidneys stop working. With any degree of CKD, patients face the risk of increasingly poor health, and kidney failure meaning they would need dialysis treatment or a kidney transplant.

As CKD is a long-term condition, it is vital that we understand more about how it can affect a patient’s quality of life. So far, most studies looking at health-related quality of life have focussed on patients with kidney failure, but we know very little about the relationship between earlier stages of CKD and quality of life.

Dr Simon Fraser

Identifying factors that affect quality of life

We have awarded Simon a research project grant to investigate the factors that affect quality of life for patients with CKD who are not on dialysis. The team will use information gathered in the National Unified Renal Translational Research Enterprise (NURTuRE-CKD) study - a long-term research study, managed by Kidney Research UK, using information from just over 3,000 people with CKD from 16 kidney outpatient clinics across the country.

NURTuRE-CKD was established to study the factors that might increase the risk of CKD becoming worse, as well as looking at the risks of developing other conditions such as heart and vessel disease and death. As part of the study, researchers have collected information on many different factors, including participants’ history of medical conditions and medications, their family medical history, measurements of height, weight and blood pressure, standardised questionnaires that assess issues like health-related quality of life, functional status, health literacy and depression, as well as collecting blood and urine samples for many kinds of tests. Some of these things might be able to be changed, such as obesity, pain and health literacy, which could make a real difference to health-related quality of life for people with CKD.

As well as analysing the information collected at the start of the study, the team will also ask participants to provide the same information again at another face-to-face study site visit and via a postal quality of life questionnaire, to see how this has changed. They will also collect information on serious health outcomes, such as kidney disease progression, hospital admissions, heart attacks and strokes and explore how these might, in turn, be affected by quality of life

What could this mean for kidney patients?

The team hope to identify factors that could be changed to improve the lives of people living with CKD; to investigate the impact of other long-term conditions on health-related quality of life; to understand how and why health-related quality of life changes over time for people with CKD; and to explore how having lower health-related quality of life might affect the chances of experiencing future problems, such as unplanned hospital admissions, worsening of CKD, heart and blood vessel disease or death.

The team will also look at potential areas of inequality, such as participants’ ethnicity and level of education to see if these affect their quality-of-life measurements and disease progression and to see what changes must be made to address these inequalities in the future.

Simon said: “As a team who have explored several aspects of what it means to live with CKD, we are delighted to have been given the opportunity by Kidney Research UK to undertake this research. This study will add new understanding of health-related quality of life for people with CKD, the way it changes over time, and the things that influence that change. In doing this we will find things that could be improved, leading to better quality of life and fewer health inequalities. Understanding how quality of life plays out in relation to important outcomes like the need for hospital admission or the occurrence of complications is really important for patients.”

Simon’s work is funded by a research project grant from Kidney Research UK for £123,850.