Last week (28 June) marked the launch of the final report of the Children’s Cancer Priority Setting Partnership (PSP) in London. The report is the result of a collaborative effort between Children’s Cancer and Leukaemia Group (CCLG) and The Little Princess Trust (LPT) with the James Lind Alliance (JLA), aimed at identifying the most pressing research questions in need of answering from the perspective of those affected by childhood cancer.
Often in the past, topics of healthcare research in children’s cancer have been determined by researchers and the pharmaceutical industry, overlooking what is most important to children, their families and the professionals who care for them. The PSP was funded by CCLG and LPT to ensure that the voices of those with lived experience of childhood cancer were heard. Through surveys, interviews and workshops designed by the JLA the project yielded the top ten research priorities in children’s cancer.
Young patients, childhood cancer survivors, parents, carers and family members, as well as cancer professionals were invited to participate and there was a special emphasis on talking to young children to make sure their opinions were heard. 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.
At the launch event, members of the project team spoke about the importance of the PSP while the audience heard from a childhood cancer survivor and parents of childhood cancer patients about what the report means to them.
Ashley Ball-Gamble, Chief Executive of CCLG, said: “It was fantastic to be able to present this pivotal piece of work and showcase how we’re shaping the future of children’s cancer research. The PSP report truly represents a new beginning in children’s cancer research as, for the first time, we know what is important to children with cancer and can focus our work and resources accordingly.”
Faith Gibson, Professor in Child Health and Cancer Care at the University of Surrey and Great Ormond Street Hospital for Children and member of the PSP coordinating team, said: “We were really pleased how well the report was received on the evening – now we need action. This action can be taken by any member of the children’s cancer community as these research priorities belong to everyone.”
Phil Brace, Chief Executive of The Little Princess Trust, said: “We were delighted to have been able to joint fund this Children’s Cancer Priority Setting Partnership with CCLG as we always knew that the results would be vital in ensuring all those involved in funding research and supporting children with cancer were aligned and focused on what is important to those affected the most by childhood cancer.”
The launch of the Children’s Cancer Priority Setting Partnership report marks a new beginning in children’s cancer research. The report reflects the voices of those affected by the disease and offers a valuable tool for researchers and research funders to focus their work and resources.
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