Announcing new quality of life research
Anthony Nolan is not the only big name celebrating its 50th birthday this year…
The EBMT, a research organisation focussed on stem cell transplants, was founded in the same year as Anthony Nolan in 1974. This year, at the EBMT’s 50th annual scientific conference, our Anthony Nolan contingent have just presented their latest research and led a special session of talks exploring how far we’ve come in 50 years of research.
We’re also excited to have announced preliminary results from some of our latest research, which aims to improve the way we measure patient quality of life following a stem cell transplant.
Here, we’ll tell you more about this research and what it means for patients.
Why patient experiences matter in stem cell transplants
When it comes to stem cell transplants, doctors can often focus a lot on outcomes like survival, or treating physical side effects. But we know that there is more to a stem cell transplant than whether someone survives or needs additional drugs. Stem cell transplants can dramatically affect someone’s mental health, social life, financial stability, and physical capacity – often for a very long time.
These patient experiences are vital for understanding a patient’s own experience of their health, encompassing their symptoms, how this affects their quality of life, and the impact of services and support. Since we’re still figuring out the best ways to collect and measure this information consistently, the full potential for this kind of research has not been fully realised. Currently in the UK, there is no standardised system for measuring the patient experience during and after a stem cell transplant.
Anthony Nolan is working to change this through a major research programme, led by Dr Gemma Pugh (Head of Patient Reported Outcomes Research) and Dr Christina Yiallouridou (Senior Research Manager), that aims to recruit hundreds of adult stem cell transplant patients and measure their quality of life. This will be the largest multi-centre research project into quality of life following stem cell transplants in the UK.
This research is exciting because it’s the first attempt in the UK to systematically collect and analyse quality of life data and socioeconomic status in adult allogeneic stem cell transplant patients. It opens up huge potential for us to identify issues that could be driving inequity in transplant care, and to help us focus on more than just survival, so more patients can live well after their transplant.
Dr Christina Yiallouridou, Senior Research Manager, Anthony Nolan.
PrEQoL and SEQoL explained
These intimidating acronyms represent the research that aims to change the way we think about and measure quality of life following stem cell transplant.
PrEQoL stands for “A Pilot study to Evaluate the collection of socioeconomic and Quality of Life data from patients undergoing stem cell transplants from donors” – which basically means it’s all about checking whether it’s possible to collect all this quality of life data, and the best ways of doing that. We’ve also consistently involved patient perspectives in making sure we craft the right tools for this.
SEQoL stands for “Scaled collection of socioeconomic and Quality of Life data from patients undergoing stem cell transplants from donors” – which is the next phase of the research. Once PrEQoL has helped us establish the best ways of measuring quality of life in patients, SEQoL will scale-up recruitment and aim to collect large quantities of data, from which we can learn about the various different factors that affect quality of life after a stem cell transplant.
There are many social determinants that impact quality of life – socioeconomic status, ethnicity, age, gender, disability… and they can all play a key role in the mental and physical wellbeing of a patient following a stem cell transplant. This is a big part of what we hope to illuminate with SEQoL.
Dr Christina Yiallouridou, Senior Research Manager, Anthony Nolan.
How do you measure quality of life?
Quality of life can be measured in different ways, but typically researchers focus on both physical and mental wellbeing. Physical measures would include things like pain, discomfort, mobility, sleep disturbance, and fatigue. Mental measures can include anxiety, depression, and ability to participate in social activities.
In PrEQoL and SEQoL, patients log their experience using digital surveys provided to them on tablets while they are in hospital, or using their own personal devices, at different stages throughout their transplant.
By measuring quality of life in this way, and tracking it throughout the transplant journey, researchers can then link any changes in quality of life with factors like socioeconomic status and ethnicity. This can help pinpoint the causes of healthcare inequity, and help us start to develop new strategies to improve quality of life for all patients.
Involving patient voices
It’s been extremely important, from the beginning of this research, that we involve patients in our decision-making about the project. We’ve worked closely with patient advisory groups in the design and implementation of this research, and we’ve also made sure to gather the opinions of the patients who participate in the research to make sure we’re accurately hearing what they want to say about their experiences.
With the help of patients, we have refined our research to use the best possible data-gathering tools for the unique stem cell transplant patient population. We expect to continue to fine-tune the design of our research to make sure it has the biggest impact possible for patients.
The results so far
The initial results from PrEQoL have just been presented at this years’ EBMT conference in Glasgow. Overall the researchers found that patients were very good at responding to survey questions, and sticking with the study throughout the first 100 days following their transplant. Of the 60 patients enrolled in this pilot study, 95% of participants remained with the study for the full 100 days, which was highly encouraging.
The study also revealed that by almost all participants, more than 90%, found using the tablet devices to consent easy, received clear information on data security, and found the digital platform easy to use.
Although PrEQoL is primarily a pilot study, and involves a relatively small group of patients, the initial results show that a stem cell transplant can majorly disrupt patients’ finances, employment status, and perception of their social standing. Unsurprisingly, a stem cell transplant also impacts patients’ physical function, fatigue, and ability to participate in social activities, all of which likely have knock-on effects on patients’ mental health. The most noticeable changes occurred at day 28 following a transplant, particularly regarding physical functioning and increased fatigue levels.
The next step is to start collecting more data through SEQoL and beginning an analysis of the socioeconomic factors and characteristics that most affect patients’ quality of life. We anticipate recruitment for SEQoL to begin very soon, and you can contact your healthcare team to find out more.
from PrEQoL at the EBMT conference.
How this research could change stem cell transplants in the UK
Once we can establish a better understanding of how socioeconomic status and other characteristics can affect patients’ quality of life following a stem cell transplant, it opens the door for researchers to investigate the best ways of addressing these inequities and improving healthcare for all patients.
SEQoL aims to change the landscape of stem cell transplants in the UK by introducing a standardised method by which transplant centres can collect socioeconomic and quality of life data, making sure we are capturing as much of the patient experience as possible.
Unearthing the causes of inequity in quality of life could make a huge difference – by helping us shape healthcare practices in a way that better supports and protects patients, and helps people live well rather than just survive.
SEQoL and its branching projects will run to at least 2028, but we hope they continue for much longer. The results of these will lead to additional projects, such as investigating the ways we can improve quality of care to best support patients who suffer from poor quality of life following transplant. Ultimately, we will be linking the data we gather about patient experience to their clinical results, helping us investigate the ways we can improve patient quality of life through changing clinical practice.
This is really just the start of bringing better quality of life awareness to stem cell transplant providers in the UK.
Dr Christina Yiallouridou, Senior Research Manager, Anthony Nolan
Find out more about our research here!
Funding for this work is provided by NIHR and Therakos.