Anthony Nolan is proud to announce the launch of SEQoL, which stands for Scaled collection of socioEconomic and Quality of Life data from patients undergoing stem cell transplants from donors. The project is the UK’s largest study aiming to understand the impact of a stem cell transplant on quality of life, and how this may be influenced by socioeconomic factors like education, income and housing.
While a potentially curative treatment for patients with blood cancer or severe blood disorders, a stem cell transplant 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-treatment. 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.
The researchers will use innovative digital technologies that can be used by patients both in-clinic and at home to collect information on the physical, social, psychological and financial impacts of a transplant, as well as symptom burden from graft versus host disease, for up to a year post-treatment. These techniques were developed as part of the project's successful pilot phase, PrEQoL, which completed earlier this year.
The study has been funded by NIHR and Therakos UK. It will run across 15 sites throughout the UK, with recruitment opening at Manchester University NHS Foundation Trust and Oxford University Hospitals NHS Foundation Trust in the next month.
Dr Christina Yiallouridou, Senior Research Manager at Anthony Nolan, who is leading the study said:
“Stem cell transplants can be lifesaving, but they also undoubtedly have a huge impact on a patient’s quality of life. Patients have to make major adjustments to their lives while they are immunocompromised for several weeks, months or even years post-treatment. Many people struggle with the physical, psychological and financial impacts of a transplant for years after treatment.
“This is the first attempt in the UK to systematically collect and analyse quality of life data in adult stem cell transplant patients. It also lays the groundwork for the next phase of our research which will link quality of life and outcomes data with socioeconomic information to help us identify and address issues driving inequity in transplant care.”
Dan Yeats, 32, who suffered major complications from his stem cell transplant in 2020 said:
“I was lucky that my transplant was very successful at treating my leukaemia. But I wasn’t prepared for was how severely I’d be impacted by the side effects.
“I have chronic graft versus host disease in my eyes, gut and lungs which causes a range of issues. The damage to my lungs makes me highly at risk of infection and means I have to weigh up whether going to meet my friends in a bar is worth me potentially shortening my life.
“One of the hardest things to accept was knowing I’d never be the same. It’s so important we do research like this to better understand the broader impacts of a stem cell transplant, so people like me can get the support we need.”
Dr Robert Danby, Chief Medical and Scientific Officer at Anthony Nolan, said:
“We're very excited to be launching this prospective, multi-centre UK study on quality-of-life (QoL) after allogenic stem cell transplantation.
“While advances in stem cell transplantation mean more patients are now receiving treatment and surviving longer, we must improve of understanding of how these therapies effect QoL, especially given the risk of side effects and long-term complications.
“With the rapid development of new cell and gene therapies, like CAR-T cell therapy, studies like these to understand and improve QoL after lifesaving but intensive therapies are more important than ever.”