We need to improve outcomes for every type of cancer and ensure every child and young person not only survives but goes on to lead a long, healthy, and happy life.
Too often, research priorities in children’s cancer are shaped by the interests of researchers or the pharmaceutical industry. This can mean the voices of children, their families, and the professionals who care for them aren’t fully heard. We’re here to change that—putting what matters most to our community at the heart of the research agenda.
In 2019, CCLG: The Children and Young People’s Cancer Association and The Little Princess Trust partnered with the James Lind Alliance (JLA) on a Priority Setting Partnership (PSP) to identify the research questions that are most in need of answering, according to those they matter to the most.
The JLA is a non-profit making initiative bringing together patients, carers and professionals in PSPs. The JLA PSPs identify and prioritise unanswered questions that they agree are the most important, so that researchers and research funders are aware of the issues that matter most to the people who could benefit from the research.
Top 10 research priorities in children’s cancer
At the end of 2022, we held a final workshop for the Children’s Cancer PSP, the last stage of the process. Fifteen professionals, four young adults who had cancer as a child, five parents and one grandparent prioritised the final 23 questions. These questions had been identified by children, young people, adult survivors of childhood cancer, families, and professionals during the national consultation. Questions were considered, debated, and deliberated throughout the day as the final list was agreed.
The final questions reflect the breadth of the cancer experience for children and families, including diagnosis, relapse, experience in hospital, support during and after treatment and the long-term impact of a cancer diagnosis. A workshop had previously been held with children and young people who identified their Top 5 priorities – these priorities are all reflected in the Top 10.
The top 10 list of priorities in full:
- Can we find effective and kinder (less burdensome, more tolerable, with fewer short and long term effects) treatments for children with cancer, including relapsed cancer?
- Why do children develop cancer (including the role that genetics plays) and could it be prevented?
- Are the psychological, practical, and financial support needs of children with cancer, survivors, and their families being met during treatment and beyond? How can access to this support be improved and what further support would they like?
- How can we speed up the process of getting diagnosed and starting treatment in the right place?
- Why do children relapse, how can it be prevented, and what are the best ways to identify relapse earlier?
- How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child’s care)
- What are the best ways to ensure children and families get and understand the information they need, in order to make informed decisions, around the time of diagnosis, during treatment, at the end of treatment and after treatment has finished?
- What impact does cancer and treatment have on the lives of children and families after treatment, and in the long-term; what are the best ways to help them to overcome these impacts to thrive and not just survive?
- How can we make more accessible treatments that are closer to home, in shared care hospitals?
- What is the relationship between chronic fatigue syndrome, fibromyalgia, chronic pain and treatment for childhood cancer? (Fibromyalgia is a long-term condition that causes pain all over the body.)
Final report
In June 2023, we published 'Research priorities in children's cancer: Final report of the James Lind Alliance Children's Cancer Priority Setting Partnership'. This comprehensive report discusses the process of arriving at the top 10 priorities, how we ensured children's voices were included in the PSP, the other research priorities identified during the process, and much more.
Next steps
Now we know the top 10 priorities for children’s cancer research. But this is only the beginning. We’re now working to understand the current landscape of children’s cancer research across the UK, particularly which funders support work in which of the priorities. We can then identify and gaps, and plan to work with funders to address these through new collaborative research.