Led by Professor Catherine Exley (Newcastle) this cross-cutting theme is harnessing the views and experiences of transplant recipients and healthcare professionals to understand and improve the measurement of quality of life and healthcare experiences after transplantation. This includes the development of patient-reported outcome measures (PROMs), which capture how someone feels about their health; and patient-reported experience measures (PREMs), which capture how people experienced their healthcare. All our research is being conducted with an inequalities lens and will be widely disseminated.
Major workstreams under this theme are:
Experiences of life after transplant
Through qualitative research, we are developing understanding of the quality of life outcomes and aspects of healthcare experience that are relevant and important to transplant recipients. These findings will help to inform PROM and PREM development; identify and understand the potential support needs of transplant recipients; and identify opportunities to improve healthcare services.
Progress to date:
- We have spoken to 40 solid organ transplant recipients from a variety of backgrounds across the United Kingdom. Summaries of the findings can be accessed here (text) and here (infographic)
- We have conducted a systematic review of qualitative research exploring transplant recipients’ experiences of quality of life after transplant (see protocol here, pending publication)
- We are currently conducting a systematic review of qualitative research exploring transplant recipients’ healthcare experiences after transplant (see protocol here).
Development of PROMs and PREMs
We are developing new transplant-specific PROMs and PREMs with consistent involvement from transplant recipients and healthcare professionals (see roadmap here).
PROMs
We are developing two new PROMs that will ask all solid organ transplant recipients about their quality of life and symptoms after transplant. These PROMs will be useful for identifying potential support needs, stimulating discussion at follow-up appointments, tracking changes in quality of life over time, and identifying differences in how quality of life is affected for different transplant recipients.
Progress to date:
- We have conducted a systematic review assessing the development, content, and quality of 26 available condition- and transplant-specific PROMs that measure quality of life in solid organ transplant recipients (see protocol here and publication here)
PREMs
We are developing a new PREM that will ask heart and lung transplant recipients about their healthcare experiences during their time in hospital for their transplant.This PREM will be useful for evaluating the quality of healthcare provided and identifying strengths and areas for local and/or national improvement. This will help identify variations and inequalities in healthcare experiences, for example, across geographical regions.
Progress to date:
- We have conducted a scoping review of eight publicly available measures of patient-reported experience of solid organ transplantation healthcare (see protocol here and publication here)
Implementation of PROMs and PREMs
We will work with NHSBT to embed routine collection of the new PROMs and PREMs within existing systems. To do this, we will interview stakeholders to identify and overcome any barriers to implementation. A national launch will inform the ways the new PROMs and PREMs can be used in clinical practice and research trials moving forward.
Patient impact
- Improve understanding and measurement of what is important to solid organ transplant recipients regarding their quality of life and healthcare after transplant
- Give voice to the views and experiences of underserved communities
- Identify possible opportunities to improve transplant healthcare services
