Our supporters help us to continue our important research through fundraising and donations, with many of our research projects supported by our Special Named Funds.
Understanding treatment decision-making processes in families where a child or young person has relapsed/refractory rhabdomyosarcoma
Lead researcher: Dr Bob Phillips
Institution: University of York
Amount awarded: £96,200
This project was funded in December 2020 by CCLG, thanks to CCLG Special Named Funds Angus’ Door, Jacob’s Join, Pass The Smile for Ben Crowther, Ollie’s Star, Super Ruby’s Rhabdo Raiser, Team Jake and a donation from Elliott’s Trust.
In children whose rhabdomyosarcoma hasn’t responded to treatment (refractory), or has come back after treatment (relapsed), there are difficult decisions to be made about what treatment to give next. Only around one in five children with relapsed or refractory rhabdomyosarcoma can be cured, and therefore there are choices to be made about how to prioritise their care.
The options might include:
- aggressive treatment aiming to cure
- treatment to reduce the amount of disease, and therefore help symptoms
- experimental trials of new treatments (also called early phase studies)
- symptom control
Choices made at these times may be extensively re-examined and become a cause of distress months, and years, after the decision. Within this project, two studies will be undertaken that are linked into understanding how decisions are made about treatments.
1 Systematic Review - looking at all previous early-phase studies in relapsed or refractory rhabdomyosarcoma and seeing how effective the different treatments are for different children. This will help to give families and professionals more accurate information about what to expect from the options available.
2 Interview Study - speaking to patients and families about how they have made, or are making, decisions about treatment in relapsed or refractory rhabdomyosarcoma. This will help researchers understand the decision-making process and how best to support families making these choices.
We continue to carry Ben in our hearts and are so grateful for the incredible support for Ben’s fund, Pass The Smile. We are humbled by the chance to contribute to research that might eventually deliver cancer-free futures for rhabdomyosarcoma patients.
Scott Crowther, dad to Ben who sadly passed away in June 2019
The results will be shared with families and professionals and combined into a best practice statement which will provide advice and support to clinicians and families about important things to consider when discussing treatment options. Importantly, the project will include patients and parents in designing and performing the research to get the best results for families in the future.
Research lead Dr Bob Phillips, University of York, said: “At a time where research funds are being squeezed, we’re overjoyed to have been awarded this funding to undertake a complex piece of research on decision making in relapsed/ refractory rhabdomyosarcoma.
“The project should help us understand what can reasonably be expected from experimental treatments, and also how different families and clinicians approach making the choices around treating patients in this tricky situation.
“Fundamental to all clinical studies, we argue repeatedly, is including families and young people in helping create, steer and share the research. This project is being undertaken with this desire to include families affected along the way, to make sure the studies are sensible and meaningful.”
Find out more at www.cclg.org.uk/our-research-projects
