Led by Professor Catherine Exley (Newcastle) this cross-cutting theme will harness the views of transplant patients and families to identify the best ways of describing and quantifying quality of life after transplantation. This will be invaluable in researching changes in practice that improve quality of life. Through engagement with stakeholders the theme will also address donation and transplantation hesitancy and will tackle individual and structural inequalities in access in underserved communities. The theme’s work will be integrated across the other themes to ensure patient benefit in the widest sense is firmly at the core of the BTRU.
Major workstreams under this theme are:
Prioritisation exercise: An initial prioritisation exercise will outline a programme of evidence synthesis projects pertinent to patient and public involvement (PPI) partners and a scoping review to identify global best practice to increase donation rates and reduce inequalities.
Lived experience: We will use qualitative work with patients and families to examine critically their experiences and quality-of-life impacts of the transplant journey and identify national and international initiatives to reduce inequalities in organ donation. We have conducted a systematic review, assessing the development, content, and quality of available condition- and transplant-specific patient-reported outcome measures (PROMs) that measure quality of life in solid organ transplant recipients (see protocol here and publication here). We have also conducted a scoping review of patient-reported experience measures (PREMs) for solid organ transplantation (see protocol here and publication here). We are currently undertaking a systematic review of qualitative studies exploring lived experiences of quality of life in solid organ transplant recipients (see protocol here). We will use the qualitative and systematic review findings to identify the quality of life outcomes and healthcare experiences that are important to this patient population.
Evaluation: We will develop new PROMs and PREMs and pilot these with different groups of transplant recipients, assessing measurement properties and patient responses. A roadmap for the development of patient-reported measures can be accessed here. We will work with NHSBT to implement an inclusive programme to reduce inequalities in organ donation and transplantation specifically in Black, Asian, minority ethnic and marginalised communities. Based on our PPI prioritisation we will commence a programme of relevant evidence synthesis projects and establish living systematic reviews to ensure that our evidence remains current.
Implementation: We will work with NHSBT to embed routine collection of PROMs and PREMs within systems. We will ensure that all of our research is conducted with an inequalities lens, is widely disseminated and that our prioritisation list remains relevant.
Patient impact
- Improving quality of life after transplantation
- Enhancing access to transplantation particularly in underserved communities
- Increasing the donor pool by addressing donation hesitancy
