We want to know what kidney transplant patients think about their healthcare. 

We have designed a new healthcare experience survey to help us improve kidney transplantation. This survey asks about the experience of being in hospital having a kidney transplant. We are now testing how well the survey works. We need your help to test the survey in what we call a “pilot test”. This page has some information about the pilot test. Please read it to help you decide if you want to take part.

This pilot test is part of a bigger study to write and test a new kind of survey for kidney transplant patients. These surveys are sometimes called “Patient Reported Experience Measures” (or “PREMs” for short). We think this survey is a good way to find out what people think about their transplant healthcare. 

We have written this survey with help from kidney patients, the public, and healthcare professionals. Now we need more people to test how well it works. This includes asking some people to fill in the survey twice at different times (a Repeat Test). 

This pilot test is about testing out the survey itself. All your answers will be anonymised. This means nobody will know what answers you gave. It also means it will not be possible to link your answers to your transplant hospital. If you do want to feed back to your own transplant team, please contact your hospital directly. 

The results may tell us something important about kidney transplant care in general. If so, we will share the key points in a public report. Nobody reading this report will know if you took part or what answers you gave.

We have asked hospitals and patient groups to spread the word to people who have recently had a kidney transplant. If you are aged over 18 and have had a kidney transplant in the UK in the last 12 months, then you can test the survey. The survey asks about your care in hospital around the time of your transplant surgery.

This work is being led by Rebeka Jenkins. Rebeka is a researcher at NHS Blood and Transplant (NHSBT) and is studying for a PhD degree with Newcastle University, 

The work is happening with a bigger team at Newcastle University as part of the Blood and Transplant Research Unit in Organ Donation and Transplantation (see https://odt.btru.nihr.ac.uk/research/theme-6/). 

Click here to find the survey on the research website. You first fill complete the "consent" section of the survey. This is to show you understand and agree to take part. You then fill in the survey on the website. It is not possible to save and resume the survey, so you will need to complete it in one go. We think most people will need about 20 minutes to fill in the survey.

At the end, you have the option to say what you thought about the survey. You are also asked a bit about your background, such as your age and gender. This is so we can understand the different groups of people who have tested the survey. You do not have to give this information if you do not want to. Your answers will be anonymised. This means your kidney transplant team will not know that you took part, or what answers you gave.

We also ask if people will fill in the survey again two weeks later in a Repeat Test. The survey is the same both times as we are checking to see if the questions work as we expect. If you want to take part in the Repeat Test, we will ask for your email address. This is so we can send a link to the second survey. We use only this email address to contact you about the Repeat Test and link your answers. It will not be used for any other reason. Once the pilot test is complete, we will delete your email address from our study records. Your answers will remain anonymised.

No, it is up to you. Nobody from your transplant team will know that you took part unless you tell them. We ask some questions about your background, but it is up to you how much to answer. You can choose to fill in the survey just once if you prefer not to do a Repeat Test.

When you submit your answers to the survey, they are automatically recorded. It will not be possible to remove your answers after they are submitted. If you have given your email address and then change your mind about the Repeat Test, you can contact the research team to have your email address deleted from the study records. Your first set of anonymised answers will remain in the records. You do not have to give a reason for changing your mind about the Repeat Test.

You can contact us by email (TransplantPREM@nhsbt.nhs.uk) or calling 07379 076 571. 

We know some people prefer or need to fill in surveys on paper. In this pilot test we are only using an online survey. We will add a paper option in the future.

We will collect all the answers together and test how well the survey questions have worked. For example, we will check if any questions are often missed out. This could mean the question does not make sense to patients. When we link the answers from the two different times in the Repeat Test, we can see if the answers are very different. This could mean it is not clear to patients what the question is asking about. We can then change the wording or layout of the survey before we use it with future patients.

We cannot link your answers to your transplant hospital. This means if you do need to feed back to your transplant team please contact them, or the Patient Advice and Liaison Service (PALS) at your hospital.

This pilot test cannot change what happened to you or change kidney transplant care straight away. But by taking part, you make help to sure this survey works as well as possible. We hope we can use the survey with many more patients soon. We hope patient feedback will be used to positively impact transplant healthcare and benefit future transplant recipients.

Some people may find remembering details of their hospital stay upsetting. You do not have to take part in the survey if you do not want to.  You may find the following links helpful: 

• https://kidneycareuk.org/get-support/counselling-and-support-service/

• https://www.kidney.org.uk/mental-health

We will keep your personal details safe and secure and treat them in strict confidence. Your email address will be stored securely on the NHS system. Only the lead researcher will access it. We will only use your email address to contact you about the Repeat Test and link your answers. It will not be used for any other reason. Once the answers have been linked, we will delete your email address from our study records. Your answers will remain anonymised. We will only use your email address if you agree to this and store it in line with the General Data Protection Regulation (GDPR). More information about this can be found here. 

The research team are separate from your transplant team and will not be able to advise you on your health. If you have any questions about your health, please contact your transplant team directly. 

This work is paid for by NHS Blood and Transplant and NHS England. It is part of a bigger piece of work by the National Institute for Health Care Research Blood and Transplant Research Unit in Organ Donation and Transplantation (NIHR BTRU in ODT). It is sponsored by NHS Blood and Transplant. 

Hospitals and patient groups are helping us find people to take part. The pilot test has been designed with input from patients and the public from the following groups:

•  NHS Blood and Transplant Patient and Public Advisory Group

• NIHR BTRU in ODT Public and Patient Research Panel. 

It has been approved independently by the NHS Health Research Authority and Social Care Research Ethics Committee.