SEQoL, one year on
One year ago, Anthony Nolan launched its landmark study aiming to understand the impact of a stem cell transplant on quality of life. Now, we reflect on our progress so far, and the impact this project could have in the coming years.
Pictured - the Patient Reported Outcomes Research Team. Read more about them here.
Progress so far
- Recruiting in 18 transplant centres
- Over 300 patients recruited of 700 target
- Five additional transplant centres in process of opening recruitment
- We are working towards developing translated materials to enable patients who speak limited or no English to join the study
What is SEQoL?
SEQoL stands for Scaled collection of socioEconomic and Quality of Life data.
It is the UK’s largest study aiming to understand the impact of a stem cell transplant on quality of life, and hopes to go beyond that by also measuring how quality of life is influenced by socioeconomic factors like education, employment, income and living arrangements.
While a stem cell transplant is a potentially curative treatment for patients with blood cancer or severe blood disorders, it can have significant impacts on recipient's quality of life. This can be due to the intense nature of the procedure and pre-treatment conditioning, where patients receive chemotherapy to remove existing stem cells and prepare them for the transplant. After treatment, quality of life may also be affected by the need to isolate from friends and family for several months due to the risk of infection, or complications like graft-versus-host disease where the donor cells can harm the patient.
SEQoL will aim to understand the full impact of a stem cell transplant on patients’ quality of life, so that in future they can be given the appropriate support pre- and post-transplant. By also collecting socioeconomic data, the study will help make sure this support can be tailored to specific groups of patients who need it most.
How SEQoL works
As part of SEQoL, transplant centres are provided with tablet devices to so that patients can complete surveys digitally and conveniently. Patients who take part in the SEQoL study complete a short questionnaire about their quality of life and social circumstances (including living arrangements, education, occupation, and household income), and are then asked to complete the same questionnaire on the day of their transplant (Day 0) and multiple times during their first year after transplant. From Day 100 onwards the questionnaire also asks patients to report any graft versus host disease (GvHD) symptoms that they may be experiencing.
Once the SEQoL study is complete the research team plan to analyse the relationship between patient’s social circumstances, quality of life and transplant outcomes.
The data from the SEQoL study will allow Anthony Nolan researchers to explore questions such as ‘How does socioeconomic status affect stem cell transplant patients’ clinical outcomes and wellbeing?’ and ‘How does a stem cell transplant affect patients’ quality of life in the first year post-transplant?’ Findings from this research will help us to identify ways to improve care for future patients.
The SEQoL project is run by Anthony Nolan’s patient reported outcomes research team, and is funded by NIHR and Therakos UK.
How SEQoL was designed
The SEQoL study aims to accurately reflect patients’ experiences after a stem cell transplant – and so designing it with patients at its heart was a priority. Before launching the SEQoL study the patient reported outcomes research team conducted preliminary research to understand how best to recruit patients to their study, and what measures of quality of life patients considered the best.
The first study the team conducted was called PrEQoL. 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 the study was all about checking whether it’s possible to collect all this quality of life data, and the best ways of doing that.
Data from the PrEQoL study demonstrated that it was possible to collect socioeconomic and quality of life data from patients undergoing stem cell transplant using digital methods. 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 team also conducted several qualitative studies investigating patients’ views towards quality of life post-treatment. The team worked with a Patient Advisory Group – a group of stem cell transplant patients who help inform and shape our research – to develop and design the project.
Findings from the qualitative studies demonstrated that the generic questionnaires typically used to measure quality of life following a transplant sometimes fail to capture the full reality of what it’s like to recover from a transplant. Patients were keen that the SEQoL study includes quality of life questionnaires which are specific to transplant and include questions which reflect common symptoms – as such, SEQoL uses a questionnaire more specific to stem cell transplants and preferred by patients; the FACT-BMT.
Patients also expressed a strong desire for longer-term studies which investigate quality of life beyond Day 100, so that a more accurate understanding of the patient journey could be gained. SEQoL goes beyond the Day 100 mark to ensure we capture this important insight.
The theme of the financial burden of a stem cell transplant came up repeatedly in interviews with patients. The physical burden of a transplant, and the associated emotional and social harms, had knock-on effects on the ability of patients to return to work, and added new financial challenges on top of immediate healthcare costs. This has led the research team to consider financial toxicity one of the main focuses of the SEQoL study.
For these studies, the Patient Advisory Group generously brought their invaluable experience and perspective to our research team. Dr Gemma Pugh, Head of Patient Reported Outcomes Research at Anthony Nolan, reflects:
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
Learn more about this preliminary research in our recent press release.
SEQoL progress so far
Currently, SEQoL is recruiting patients in 18 transplant centres across the UK, with over 300 patients out of our target of 700 recruited in the past year. An additional five transplant centres are in the process of opening recruitment. We hope to have the involvement of all 23 NHS transplant centres by April 2026.
Recruiting patients and making sure they continue to participate for the duration of the study has been identified as a challenge within the SEQoL study. We are working with our Patient Advisory Group to identify the best methods and approaches to increase study engagement and data completion at follow-up timepoints. We are also working towards developing translated study materials to enable patients who have limited or no-English to join the study. To support this, the research team distributed a survey across all transplant centres to assess language needs, and the availability of translation and interpretation support. The survey was launched in May 2025 and the responses are currently being analysed.
The team are optimistic that SEQoL will help us better understand the impact of stem cell transplants for UK patients, and produce recommendations for care improvements that will help every patient not only survive, but thrive, following their transplant.