While research over the last four decades has dramatically increased the overall five-year-survival rate for all childhood cancers to around 84%, further research is needed to not only improve outcomes for all types of children’s cancer, but to ensure all children and young people go on to live long, healthy and happy lives.
Topics of healthcare research in children’s cancer are often driven by the interests of researchers and the pharmaceutical industry, meaning what is most important to children, their families and the professionals who care for them, may sometimes be overlooked.
In 2019, Children’s Cancer and Leukaemia Group (CCLG) 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.
Find out more about the Children's Cancer PSP process
Top 10 research priorities
The Top 10 research priorities for children’s cancer as agreed at the final workshop of the Children’s Cancer Priority Setting Partnership are listed below. 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, and much more. You can download a copy below.
Final report of the Children's Cancer PSP