Participate in a Transplant Recipient Study

Dear All,

A research team based at Newcastle University has approached WDSG-UK to help reach out to liver transplant patients associated with our Group. The team is looking to improve understanding of life after solid organ transplantation. Their work is funded by NHS Blood and Transplant and is part of the Newcastle and Cambridge NIHR Blood and Transplant Research Unit in Organ Donation and Transplantation http://odt.btru.nihr.ac.uk/theme-6/.

The team has developed transplant-specific patient-reported outcome and experience measures. These are surveys that allow transplant recipients to report on their quality of life, symptoms, and healthcare experiences after transplant. The team now needs help with testing these surveys to ensure they work as needed, as they are keen to make sure that their research represents the voices of transplant recipients across all solid organs.

WDSG-UK invites all transplant recipients to take part. Please read the Participant information sheets attached/the poster attached/and the advert below, and if you are happy to proceed, please follow the relevant links to the three questionnaires.

Understanding Life After Transplant: Developing transplant-specific patient-reported outcome and experience measures for solid organ transplant recipients – Call for participants

Organ transplantation saves lives. However, people’s experiences of quality of life and healthcare after transplant are not well understood.

To help us understand more about experiences of life after transplant, a research team at Newcastle University has developed three surveys. These allow people to report on their quality of life, symptoms, and healthcare experiences after transplant.

This research is part of the Newcastle and Cambridge NIHR/NHSBT Blood and Transplant Research Unit in Organ Donation and Transplantation (http://odt.btru.nihr.ac.uk/theme-6/)

We need people to help us test the surveys to make sure they work the way they are intended. There are multiple ways you can get involved to help us.

If you live in the United Kingdom, are aged 18 years or older and have received a solid organ (heart, lung, kidney, liver, pancreas) transplant12 months ago or more, we would like to hear from you.

You can choose to be involved in one or both of the opportunities detailed below.

For more information on what is involved in taking part, please take the time to read the attached participant information sheets attached to this email.

If you have any questions or would like to talk with the study team, please email Ben Rimmer at: ODT.experiences@newcastle.ac.uk

1. Quality of Life/Symptoms After Transplant Surveys – Online testing

Help us understand how the surveys work in practice.

For more information, please visit: Quality of life after transplant surveys pilot test

1. To access the Quality of Life After Transplant survey, please follow this link: https://newcastlehealth.eu.qualtrics.com/jfe/form/SV_1zYXJ6mXCyHQNp4
    
2. To access the Quality of Life After Transplant – Symptoms survey, please follow this link: https://newcastlehealth.eu.qualtrics.com/jfe/form/SV_elmyjg4bjkyOtEO

2. Healthcare Experiences After Transplant Survey – Interview

Help us check whether the survey questions are relevant, easy to understand, and cover all necessary aspects of healthcare experience.

If you are interested, please complete the expression of interest form: https://forms.office.com/e/5e5aL4eruR