International Childhood Cancer Day
International Childhood Cancer Day is an opportunity to remember that ‘anyone’ includes newborn babies through to grumpy teenagers. Children with cancer can be cured around 80% of the time in high income countries, though that varies a lot with the exact type of cancer they have. The cancers that children of different ages get vary across that wide spectrum of development, and are mostly very different than the cancers that adults develop, but they can be treated in similar ways. We use combinations of chemotherapies, surgery, radiotherapy, immunotherapies, and newer chemo-like drugs, often over the course of many months or years. Researchers are working across the globe to understand how children develop cancers, what drives them, and how to more effectively treat them.
The cancer, and the treatments, can have significant side effects however. Managing the side effects, and everything else that isn’t the direct treatment of the cancers, is called supportive care. And supportive care isn’t just looking at how to cope with hair loss. When a team in Leeds looked back across those children who had dies with cancer, or following a ‘bone marrow transplant’ (more correctly called a haemopoetic stem cell transplant), one third of the patients who died did so not of their cancer directly, of a treatment related complication. This rose to 80% of those with transplant and blood cancers. Research in this field is as important to the patients coming along right now as the discovery science with be to those in two decades time.
It was this belief that led to the creation of the Candlelighters Supportive Care Research Centre, a collaboration between the University of York, UK, and Candelighters, the Yorkshire children’s cancer charity. This centre is taking forward research in supportive care. Unlike the past, where research used to be led by clinicians and researchers doing research “on” patients, the ways the researchers wanted, measuring the things they found interesting, the Centre has developed an award-winning group where patients and their families are involved in deciding what should be researched, fine tuning how the research is done, and sharing the results in ways that make sense.
The Candlelighters Supportive Care Research Centre’s work is determined by a priority setting exercise, and regular groups where families on and off treatment advise researchers on their plans for the future. The priority setting exercise gives a list of the most important areas for research to focus on. The CSCRC also worked to make sure that research reaches the hands and hearts of the clinical teams, collaborating to make clinical practice guidelines (CPGs): carefully constructed summaries of the best research evidence turned into suggestions for how best to manage different problems patients might face. There are guidelines for managing febrile neutropenia, mucositis, nausea and vomiting, fatigue, preventing infections, and safe eating on treatment.
Children with cancers will have better and better outcomes by discovering new treatments, reducing the side effects of effective ones, and being guided by the patients and families into what areas to address and how to make everything work properly.
Professor of Paediatrics and Evidence Synthesis at the Centre
for Reviews and Disseminiation at the University of York and Hull/York
Medical School, and an Honorary Consultant in Paediatric / Teenage-Young
Adult Oncology at Leeds Children's Hospital.
He is also the Director of Candlelighters Supportive Care Research
Centre, where his main areas of work are in the development of
supportive care for children with cancer, individual participant data
(IPD) meta-analysis, and the development of skills in appraisal and
translation of clinical research in practice.
Bob was the Clinical Lead for the UK NICE Guideline on the management of
neutropenic sepsis, as well as international guidelines on the topic. In
addition to the work in febrile neutropenia, he has undertaken work on
interventions to ameliorate the side-effects of cancer treatments in
childhood including the management of chemotherapy-induced nausea and
vomiting, constipation, nutritional support, nephropathy and mucositis.