The European Society for Blood and Marrow Transplantation (EBMT) is an annual event which brings together the world’s leading stem cell transplantation clinicians and scientists to share their latest findings. This year’s conference was due to take place in Madrid but will now be held virtually at the end of August due to the coronavirus pandemic.
Anthony Nolan will present results from a range of research projects that have all involved our dedicated community of supporters. They are at the heart of everything we do, so using the experiences of our patients and the expertise of the clinical professionals we work with, is the best way to improve the services we provide. This blog features three areas of work that have allowed us to do just that.
Working with healthcare professionals to build a better picture of post-transplant care across the UK
In May 2019, Anthony Nolan and an Expert Steering Group of leading healthcare professionals, local NHS representatives and patients published A pathway for post-transplant care. This report highlighted the services and support packages that are central to patient recovery.
We’re now focused on making the pathway a reality but, to do that, we need to know where the biggest gaps in care are. We were therefore delighted to work with the British Society of Blood and Marrow Transplantation and Cellular Therapy (BSBMTCT) on a survey of transplant centres across the UK. BSBMTCT is the professional body for those working in the field of stem cell transplantation which monitors the outcomes of all transplants performed in the UK.
The survey ran from late 2018 to early 2019 and more than 80% of transplant centres across the UK responded. The results of this survey were compared to a similar study conducted in 2014, to see how things are changing over time.
We were pleased to see that just over half of all transplant centres now provide a dedicated long-term follow-up clinic for transplant patients, compared to a third in 2014. Nearly 90% of transplant centres now have clear post-transplant care policy for their patients, an increase of 20% from the previous survey.
Unfortunately, other areas of patient care have not seen a greater improvement. Still, only a third of transplant centres include psychological support in their post-transplant care policies to help patients cope with the emotional impact of their diagnosis and recovery. There is also still a lot of variation in access to post-transplant vaccinations and cancer screening programmes between transplant centres.
The survey identified that the biggest barriers to delivering more effective post-transplant care relate to limited NHS money or resources. During these challenging times, this is a difficult barrier to overcome. However, we’re continuing to work with the Expert Steering Group to identify possible solutions, which would require minimal investment.
The survey provides the clearest picture yet of post-transplant care across the UK and identifies the areas which require the most urgent improvement. We will continue working with healthcare professionals, patients and their families to ensure that everyone gets the post-transplant care they need.’
Working with professional bodies to harmonise stem cell transplant protocols
Before transplant, patients undergo conditioning therapy, consisting of chemotherapy and/or radiotherapy, to prepare their body for the transplant. Based on various clinical factors including age, general health and type of blood cancer, some patients are given reduced intensity conditioning (RIC) therapy.
However, standardised methods for these patients do not currently exist and there are variations between the treatments given by different transplant centres.
In 2015, BSBMTCT and Anthony Nolan launched the Protocol Harmonisation Initiative (PHI) to determine how much these methods differed across various centres and how they should be standardised. As part of this work, clinicians from Birmingham and Newcastle NHS Trusts have conducted a survey of 22 transplant centres to measure the variation in 12 different RIC protocols.
The survey showed various aspects of RIC therapy varied across transplant centres including the type and dose of steroids, treatments for preventing seizures and the influence of patient body weight when making treatment decisions.
Harmonising these treatment plans in the future will allow BSBMTCT to collect more robust data related to patient outcomes. When more patients are given comparable treatments, it will become easier to identify which treatment plans are more beneficial to individual groups of patients, based on certain clinical characteristics.
Working with patients to improve the My Transplant Tracker app
In 2018, Anthony Nolan launched My Transplant Tracker, the first app to allow stem cell transplant patients to track and record aspects of their recovery. As part of our commitment to using the voice of our patients to develop the services we provide, we reviewed the app after its first year to identify how it could be improved.
Stem cell transplant recipients attending our patient education day in Manchester were invited to take part in a focus group run by the app’s developers, Imagineear. Through discussion, they decided on the most important features they would want to see in their ideal post-transplant patient app. All feedback was recorded and analysed to identify the functions to be incorporated into the updated version.
Three key areas of improvement were identified from the focus group:
- The option to store and track a wider range of transplant related topics including mood, scanned hospital letters and pictures of visible side effects like skin GvHD.
- While some patients were interested in tracking their diet, exercise and sleep, they saw no benefit in setting recovery-related goals which they could work towards. They felt the idea of failing would have a negative impact on their mental health.
- Patients wanted to use the app to connect with other stem cell transplant patients and share their experiences, as well as improved access to online forums.
Exploring the needs of our patients has provided valuable insight into the improvements needed to better meet their physical and mental needs. The app is now being updated to give patients more options to personalise the information they store, which can be recalled later, within a diary format. This includes medical appointment and medication reminders sent as notifications to the phone’s home screen and the ability to see their data daily, weekly or monthly. Better integration with the Anthony Nolan Patient Forum will also be included.
The conference runs from 29t August to the 1 September and Anthony Nolan staff will be tweeting about the latest developments. Please also look out for our future blog post summarising the most important and promising research breakthroughs after the event.
More information about the event is available from the EBMT website.