Beyond survival: New research improves understanding of how stem cell transplants impact patients' quality-of-life
- Two new studies from stem cell charity Anthony Nolan improve understanding of patient quality-of-life following a stem cell transplant.
- The findings highlight the profound changes that patients can experience – especially due to becoming immunocompromised – and the need for a wider range of physical, social, emotional and financial support.
- Patients unanimously expressed enthusiasm about being involved in long-term quality-of-life studies, to help more accurately track changes in the years following a stem cell transplant.
- The studies suggest that current patient reported outcome measures (PROMs) sometimes fail to reflect the full breadth of the impact of stem cell transplants – especially regarding financial burden.
- A crucial patient advisory group helped design this research and provided feedback during data analysis, highlighting Anthony Nolan’s commitment to involving patient voices in patient reported outcomes research and gathering real-world evidence.
Research reveals the unique burdens faced by patients
Stem cell transplants can impose a unique burden on patients, including dramatic changes to their quality-of-life that can become an unprecedented ‘new normal,’ according to research from UK stem cell charity Anthony Nolan.
The findings, published today in Supportive Care in Cancer1 and last month in BMC Cancer,2 are based on patient interviews and highlight the magnitude of quality-of-life changes, and the requirements to provide better and wider-ranging care for patients.
A stem cell transplant is a potentially lifesaving treatment for thousands of people each year with blood cancer or a blood disorder. It involves replacing a patient’s unhealthy blood stem cells with new cells from either themselves or a genetically matched donor.
However, only around 50% of people survive a transplant for more than five years. For those that do, the burden on their everyday lives can be profound. More work is needed to fully appreciate and measure the issues that patients encounter in the years following a transplant, and the improvements to care and analysis that can be made to address them.
The two studies, conducted by stem cell charity Anthony Nolan and with support from a patient advisory group, are the result of a series of interviews with 21 stem cell transplant patients. The interviewed patients had an age range of between 26-71, and had received a transplant within a year to 11+ years ago.
The studies reveal the breadth of impacts a stem cell transplant can have on patients’ wellbeing, as well as the limitations of current measurement tools that attempt to gather this information.
Patients surveyed reported that being immunocompromised following their transplant can have knock-on effects on several aspects of quality-of-life. One patient reflected that:
“… if I go and sit in a bar for four hours, I’m likely to get ill, and/or how is the fatigue going to kill me the next day? […] And so, the anxiety over getting ill reflects in me getting ill, in a slightly different way. So, that then turns into declining invitations last minute […] because I was worried about getting ill, which leads to not being invited in the future.”1
A recurring theme in the interviews was how the physical effects of a transplant can cause social challenges, which can cause emotional challenges, and all these factors can interact with each other in often unexpected ways.1
Patients especially highlighted how hard it can be getting back to work post-transplant, and how employers were unable or reluctant to help people returning to work. Patients reported being ineligible for benefits after their transplant, and the theme of the financial impact came up repeatedly in interviews.1
The researchers hope that these findings will help inform healthcare providers and patients about the quality-of-life changes that can be expected in the days, months, and years following a stem cell transplant.
When asked about measurement tools used to examine patients’ quality-of-life following transplant,2 patients reported that some of these tools can fail to capture the full patient perspective of quality-of-life following a transplant. This finding has allowed Anthony Nolan researchers, while designing other research projects, to select questionnaires that are more reflective of patients’ lived experiences, and allow more nuance in responses.
Patients were keen to be involved in long-term data collections studies, expressing that the post-transplant journey continues many years after the transplant and can involve both day-to-day variations and longer-term changes in wellbeing.2
Patients also expressed that tools used to measure quality-of-life could be more personalised to patients depending on their specific circumstances. Some patients mentioned that it would be useful for the data collection to trigger flags for healthcare providers to check in with patients on areas of reported concern or distress, and provide extra resources or support.2
The Anthony Nolan researchers have also used these findings to help design the SEQoL (Scaled collection of socioEconomic and Quality-of-Life data) study, the UK’s largest study aiming to understand the impact of a stem cell transplant on quality-of-life. Patient reported outcomes research is crucial in helping to shape the direction of future studies that use real-world evidence to advocate for patient care, and Anthony Nolan researchers hope that these findings will be used to improve patient quality-of-life for stem cell transplant recipients around the world.
Anthony Nolan is calling for further research to better understand and address patient quality-of-life following a stem cell transplant. You can donate to support Anthony Nolan’s research here: anthonynolan.org.
Dr Gemma Pugh, Head of Patient Reported Outcomes Research at Anthony Nolan
We’re delighted to be releasing this research now, after working closely with our patient advisory group to design and analyse these studies. This research helps provide invaluable insight into the changes that patients experience following their transplant, and will inform future research design to better reflect the full breadth of changes to quality-of-life following a stem cell transplant.
These studies are excellent examples of how patient involvement can help shape the design and analysis of patient reported outcomes research. Our patient advisory group was instrumental in ensuring the patient experience was at the forefront of our study design, helping us produce relevant interview questions and conduct thorough and representative analysis of the interview data.
Without patient involvement, we would not be anywhere near as confident that our research could have as much impact for patients as possible. Thank you to our dedicated group of patients who sacrifice their time to share their experiences and insights with us.
Dr Gemma Pugh, Head of Patient Reported Outcomes Research at Anthony Nolan and lead author of the new studies.
Liam, diagnosed with Severe Aplastic Anaemia, underwent a stem cell transplant in April 2023
Once you’ve come out the other side of a stem cell transplant, you realise it’s not just health that’s the most important thing, but help, before, during and after. Hopefully these studies will help highlight what needs to be done to make the new normal, normal again.
Liam, stem cell transplant patient.
Peter, recipient of two stem cell transplants and member of patient advisory group
I was delighted to be involved in the study to consider how quality of life was affected after a stem cell transplant. I have had two stem cell transplants and been unable to work after the second. I had reflected that I was fortunate to be in my mid 50s and able to retire. Had I been younger I would not have had that choice. The opportunity to contribute to the research and to be asked to input into how the study was designed was fantastic. The feedback we received from the research team was excellent and I think we helped in a small way to ensure the study was well received by patients.
Peter, recipient of two stem cell transplants and member of the patient advisory group.
Links to papers
- Pugh et al (2025b) Understanding patient quality of life following haematopoietic cell transplant. Support Care Cancer 33, 562, https://doi.org/10.1007/s00520-025-09578-4
- Pugh et al (2025a) “It’s very important that you measure throughout that journey…”: patient perspectives towards quality-of-life data collection following haematopoietic cell transplant. BMC Cancer 25:864, https://doi.org/10.1186/s12885-025-14269-8
Contact
For more information, and to enquire about media interviews, please contact the Anthony Nolan press office using press@anthonynolan.org or 020 7424 1300.
Out of hours, contact the duty press officer on 07881 265 285.
Notes to Editors
Please note: Anthony Nolan changed its name in 2011 and is no longer known as Anthony Nolan Trust.
About Anthony Nolan
Anthony Nolan is a UK stem cell transplant charity with more than 50 years of expertise in uniting science and people to push the boundaries of what can be achieved for blood cancer and blood disorder patients.
Its world-leading stem cell register matches potential donors to patients in need of transplants. It carries out cell and gene therapy research to increase transplant success and supports patients through their transplant journeys.
Anthony Nolan helps four people in need of a transplant a day, giving more people a second chance at life. But the charity won’t stop until all patients have access to the treatment they need, so many more survive.
Stem cells hold enormous potential and have the power to help people with blood cancers and blood disorders. This potential inspires everything Anthony Nolan does. Driven by patients, backed by stem cell donors, and powered by science, the charity won’t stop until the lifesaving potential of the cells inside us all has been uncovered.
Join Anthony Nolan’s register or support its research. Together, with your help, Anthony Nolan can unlock the answers inside us anthonynolan.org
What is a stem cell transplant?
If a patient has a condition that affects their bone marrow or blood, then a stem cell transplant may be their best chance of survival. Doctors will give new, healthy stem cells to the patient via their bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
Key statistics
- UK stem cell charity Anthony Nolan was founded by Shirley Nolan in 1974.
- The charity facilitates around 1,100 stem cell transplants from an unrelated donor every year for patients in the UK and more than 300 for patients abroad. For many, a transplant is their last chance of survival.
- Since its inception Anthony Nolan has facilitated over 26,500 transplants for people around the world.
- Around 90% of donors donate through PBSC (peripheral blood stem cell collection). This is a simple, outpatient procedure. Donors are supported throughout the process by the Anthony Nolan team.
- Currently 16% of the UK Anthony Nolan stem cell register is made up of young men, but they account for more than half of people called upon to donate.
- There is a pressing need to recruit more people from diverse backgrounds to the Anthony Nolan register, to help more patients from minority ethnic backgrounds find the lifesaving matches they need.
- Blood cancer is the fifth most common type of cancer in the UK and the third biggest cancer killer. It accounts for 9% of all new cases of cancer diagnosed in the UK.
- To join the Anthony Nolan register, you must be 16-30 and healthy. Anthony Nolan’s world-leading Research Institute has shown younger donors offer better survival rates for patients.