First recipients of the Myeloma UK Survivorship Grant announced

We are delighted to announce Dr Orla McCourt and Prof Abi Fisher as the first recipients of the Myeloma UK Survivorship Grant. Their ground-breaking work will dig deeper into the impact of receiving complex and distressing information during clinical trials on people’s quality of life.

Marion Sauvebois, Senior Press and Content Officer at Myeloma UK, spoke to them about why now is the time to focus on survivorship and how this research could pave the way for more sensitive and compassionate doctor-patient communication.

Tell us about the project and how it will benefit people with myeloma. 

Dr Orla McCourt and Prof Abi Fisher: Our project, the RADAR Attitude Study, or RADIUS for short, is a sub-study within the existing RADAR clinical trial that aims to better understand how patients feel about receiving information about genetic risk and their response to treatment, how distressing they find it, what kind of support they want. 

The RADAR trial has a personalised, precision approach to medicine: it uses test results about the genetic makeup of people’s myeloma as well as how they responded to their initial treatment to then allocate them to receive different treatments. This could lead to more effective treatments for people living with myeloma. 

As we move towards precision medicine and these clinical trials, which are quite complicated by design, we need to learn more about what it means for people to receive those results and how receiving that information affects their quality of life. 

We know that a myeloma diagnosis can be really distressing for patients. At the point of diagnosis, people are not taking in information about their disease and treatment, which adds to the uncertainty. And we know that high levels of distress can really impact cancer outcomes and quality of life. We believe that appropriate psychological support should be part and parcel of cancer care, and the hope is that, by doing the RADIUS study alongside RADAR, we can help shape the way that information is provided to patients and improve care and doctor-patient communication around treatment.

What inspired the project?

Prof Abi Fisher: The study was initiated by a patient representative on the RADAR trial so it really is all about patient voice, about understanding patients’ experiences, what they want and how they want it. The patient representative approached us because he was concerned people on the trial might struggle to understand the information they were getting at all the different stages. You might get a genetic test and suddenly be told you’re high-risk and you might not know what it means. That could really be distressing and obviously have a big impact on your quality of life. It could also impact the trial because you might drop out. These trials are complicated, they have to be, so it’s about how we can support patients and improve communication.

Why is focusing on survivorship and quality of life so important going forward?

Dr Orla McCourt: We are really excited that survivorship now features so strongly in the Myeloma UK strategy and that it will feature in the research strategy. Patients for many years have told us it’s important that we work on finding out what affects their quality of life but also the things we can do to improve quality of life when living with myeloma. Partnering with a charity like Myeloma UK, that advocates for and funds that sort of work is really important. Many other charities and funders very much focus on clinical trials, which is obviously crucially important, but patients are always telling us that this work matters to them also.

Tell us about your background and how your previous experience will inform this project.

Prof Abi Fisher: I’m a professor in the University College London Department of Behavioural Science and Health, and for over 10 years most of my research has been focused around improving outcomes for cancer patients, often around access to physiotherapy and rehabilitation, but also working with myeloma patients around improving doctor-patient communication. 

Dr Orla McCourt: I’m a clinical academic physiotherapist and I’ve worked as a specialist within haematology for over 10 years, and then more recently I’ve had a specific clinical specialist physio post within myeloma at University College London Hospitals. My research focuses on improving rehabilitation and supportive care for people living with myeloma, and particularly looking at exercise and physical fitness to help people manage their symptoms and side effects, prepare for more intensive treatment and help their recovery after treatment.

What is Myeloma UK’s biggest asset as a charity?

Dr Orla McCourt: It’s that representation of people living with myeloma. Recently I’ve had experience working with the Patient and Carer Research Panel and to be able to get that patient voice is really unique. A lot of people with myeloma have also told us that they don’t necessarily resonate with more generic resources. They want myeloma-specific information and advice – that is really crucial. So for us to work with Myeloma UK means that we have that link to that trusted source and resource for people with myeloma. 

Prof Abi Fisher: Myeloma UK is all about the patient and carer voice and it aligns perfectly with our research, which is trying to bring the patient voice to the experience of precision medicine. Working with a charity like Myeloma UK from the start means that our findings could reach so many more patients and the potential impact could be much greater.