Patient activation, symptom burden and quality of life in the TP-CKD cohort

Principal investigator: 
Alice Smith
University of Leicester

What is already known about this topic and why is it important?

Chronic Kidney Disease (CKD) is a condition where the kidneys gradually become unable to carry out their normal function until they reach a stage when the patient needs dialysis or a kidney transplant. People with CKD suffer from a range of symptoms which can reduce their quality of life. As for all long term health conditions, it is important for people with CKD to try to be partners in their own healthcare as much as possible, so they can manage their day to day lives and their symptoms to achieve the best possible quality of life. The desire, confidence and ability to take control of one’s own healthcare is termed “patient activation” and can be assessed by a questionnaire called the Patient Activation Measure (PAM).

Transforming Participation in Kidney Disease was a project run by the Think Kidneys programme. The aim was to support renal units to help and encourage kidney patients to get more involved in their own care. As part of the project, three surveys were sent to kidney patients:

1. The PAM, to assess how far they want to be involved in their care (patient activation)

2. The symptoms that people experience

3. Quality of life  

How will you carry out your study?

This study will use statistical analysis of the survey response data to see if there is any relationship between patient activation, symptoms and quality of life in people with CKD.

How will you decide which patients are included in your study?

All the surveys that were returned in the project will be included

How many patients do you anticipate including?


What new information will your study generate and how will this benefit patients?

This work will be the first to describe kidney patient activation levels in the UK and will include patients with early CKD before they need dialysis as well as those who depend on regular dialysis and those with a kidney transplant. It will also be the largest study anywhere in the world to look at the relationships between activation and symptom burden and quality of life. It will begin to identify patient characteristics associated with poor and good activation levels, thereby indicating which patients may need extra help to manage their health, symptoms and quality of life, and what kind of support is most appropriate for each individual patient.

Winnie Magadi, Sabine van der Veer, Nicola Thomas, Rachel Gair


NICE accredited clinical practice guidelines 

Available here

23rd Annual Report

Analyses about the care provided to patients at UK renal centres.

Read the report


A report on the nationwide collection of AKI warning test scores. 

Read the report