Theme 6 is led by Professor Catherine Exley (Newcastle). In this theme we will speak to transplant patients and families to help us understand how transplantation affects their lives and what is important to them after transplantation. Through this work we hope to identify changes to current practice and care that can improve quality of life.
Through discussion with patients, families and doctors, we will also explore what concerns people may have about organ donation and transplantation. We particularly want to understand what barriers there may be to organ donation and transplantation in underserved communities.
The Theme 6 team will work with other themes across the BTRU to ensure that patients’ needs and experiences are at the core of the research that is carried out.
Major projects under this theme are:
Prioritisation exercise: We will work with our patient and public involvement (PPI) partners to identify research priorities. These will guide a programme of what are called evidence synthesis projects. Evidence synthesis involves bringing together a range of information sources. The reason for doing this is to gain a detailed understanding of what is already known about a topic. This will help us to identify any gaps in current knowledge so that we can try and address them. We will also undertake a review to identify global best practice in two areas. The first is how to increase donation rates. The second is ways to help reduce inequalities in organ donation and transplantation.
Lived experience: We will conduct interviews and focus groups with patients and families. The purpose of these is to examine their experiences of the transplant journey and to help us understand how it impacts on quality of life.
We will review currently available Patient Reported Outcome Measures (PROMs) for transplant patients. PROMs are questionnaires that measure a patient’s view of their health. We will also review Patient Reported Experience Measures (PREMs) for transplant patients. PREMs are questionnaires that measure a patient’s views of their experience of receiving care. We will combine this information with the views of patients and families. This will enable us to identify the most suitable PROMs and PREMs for possible use in transplantation.
Evaluation and implementation: We will refine the selected PROMs and PREMs and test these with different groups of transplant recipients. We will then work with NHS Blood and Transplant (NHSBT) to introduce routine use of PROMS and PREMS in the NHS for organ transplantation. These will help transplant patients report how they feel about their health and the care that they are receiving.
We will work with NHSBT to implement an inclusive programme to reduce inequalities in organ donation and transplantation in underserved communities. Working with PPI partners we will work to establish ways of keeping up to date with research that is being carried out on this topic around the world. We will ensure that all of our research maintains a focus on inequalities in organ donation and transplantation, is widely reported and shared, and remains up to date.
Patient impact:
- Improve patient experiences (quality of life) after transplantation
- Improve access to donation and transplantation particularly in underserved communities
- Increase donation by addressing concerns and worries that make people hesitant to donate
