Determinants, trajectory and impact of health related quality of life in adults with CKD; the NURTuRE (National Unified Renal Translational Research Enterprise)-CKD HRQoL Study

Chronic kidney disease (CKD) is a common, long-term condition affecting about one in ten adults in the UK. CKD can range from a mild condition with no or few symptoms, to a serious condition where the kidneys stop working, sometimes called kidney failure. Any degree of CKD increases the risk of poor health outcomes including early death and/or developing end-stage kidney disease (ESKD) requiring treatment with dialysis or kidney transplantation. Most studies on quality of life have focused on people with ESKD and we don’t know so much about the relationship between less advanced CKD and quality of life. There is also growing evidence that other co-existing long-term health conditions such as diabetes and stroke influence health-related quality of life for people with CKD.

This research study aims to understand the things that affect health-related quality of life for people with CKD who are not on dialysis. It will use information already gathered in the National Unified Renal Translational Research Enterprise (NURTuRE-CKD) – a long-term research study of about 3000 people (the largest in the country) with CKD from sixteen kidney outpatient clinics across the country. NURTuRE-CKD was established to investigate factors that increase the risk of worsening CKD (i.e. moving towards a point when dialysis or transplant may be needed), the development of major ‘vascular’ disease events (this includes conditions such as heart disease and stroke) and death.

One of the great strengths of ‘NURTuRE-CKD’ is that it collected information on many things at the start of the study. These included 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, and blood and urine samples for many kinds of tests. Some of these things might be modifiable, such as functional status, obesity, pain and health literacy, which could make a real difference to health-related quality of life for people with CKD.

As well as looking at the initial information already collected at the start of the study, we will ask participants for further information at two other times:

• via a further face to face study visit collecting the same information again, to see how this has changed.
• via a repeat of the quality of life questionnaire which will be sent out via post during 2022

The goal is to track these measures over time, to see how they’ve changed and what factors influence this. Repeating these measurements lends more strength to any associations we may find between quality of life and any modifiable factors. It’s important to patients to find out how these things change over time as they will have these conditions for many years.

The main aims of the research proposed here are:

• to use information collected from the people in NURTuRE-CKD to investigate things that are potentially
modifiable i.e. that could be changed to improve health-related quality of life;
• to investigate the impact of other long-term conditions on health-related quality of life in people with CKD;
• to explore how health-related quality of life changes over time for people with and the factors associated with change;
• to explore how having lower health-related quality of life (compared to better health-related quality of life) might affect the chances of experiencing future health-related problems, such as unplanned hospital admissions, worsening of CKD, major vascular disease events or death up to five years after participants’ first study visit. Unplanned hospital admission, worsening of CKD, major vascular disease events and death are important issues for people with the condition, and it is valuable to understand their relationship to health-related quality of life.

We hope to find factors that can change people’s quality of life with CKD, but are also looking at potential areas of inequality such as participants’ ethnicity and level of education to see if these affect their quality of life measurements, CKD progression, vascular disease events and death. If we discover that some things affect quality of life such as how well someone reads and speaks English, their level of obesity, their functional status, how many symptoms they have and their mental health, we can find ways to try to address these inequalities in the future.