Child Cancer Smart is a CCLG project with the University of Nottingham. It will be an evidence-based awareness campaign, providing guidance around when to see a doctor or when and how to investigate children and young people further, to accelerate diagnosis for all.
The idea for it came about after the success of the award-winning ‘HeadSmart’ campaign, which was set up to raise awareness around the signs and symptoms of brain tumours. The campaign was associated with halving the time taken to diagnose children with brain tumours across the UK. Earlier diagnosis means less brain injury at point of diagnosis and the potential for less intensive treatment and reduced morbidity and mortality.
Angela Polanco, mother of Bethany who sadly died after being diagnosed with a Wilms tumour, asked us why other cancers hadn’t been addressed, given the success of HeadSmart, and the journey to Child Cancer Smart began.
What’s been done?
To provide the campaign’s evidence, a series of research projects, funded by the National Institute for Health Research (NIHR) and CCLG, have taken place in recent years. The first was a large national observational study called the Childhood Cancer Diagnosis (CCD) study. It looked at children and young people diagnosed across the UK from 2020-2023, asking important questions about how long it took for them to be diagnosed and what route they took. Its data will allow us to understand the current picture of childhood diagnosis in the UK and what factors might affect the intervals, enabling us to choose the priorities for focus in Child Cancer Smart.
We hope it will optimise referral pathways and speed up diagnosis and, ultimately, improve outcomes.
The second research project involved a series of systematic reviews (where all of the published scientific evidence is reviewed to see what good quality evidence is available on the topic) and Delphi consensus processes (where experts come together to agree recommendations in a structured way) to develop new tumour-specific clinical guidelines which will be translated into public- and healthcare professional-facing materials for Child Cancer Smart.
The third is the Childhood Illness Perception (ChIP) study. We ran focus groups with parents with and without childhood cancer experience, to understand the public’s perception of childhood cancer and how they seek healthcare information and advice, to see if there may be myths that need busting through the campaign messaging.
We’re in the process of analysing and writing up the CCD study data and aim to publish this by the end of the year. The ChIP study showed us that the public perceptions of cancer are different to reality. Parents of children with cancer told us that their concerns were dismissed and while they hadn’t thought of cancer, they also knew that the illness wasn’t following the usual patterns of short-lived illnesses they were used to.
What’s being developed and how it will it help?
For each guideline, the most important next step is developing the decision-support tool for each symptom. This tool has been well received by healthcare professionals as they help not only identify children and young people who need investigation, but also to safely reassure those who don’t.
We’re also developing the branding and messaging for the campaign, making sure that children and young people, as well as families, who have been affected by cancer have a chance to have their say and take part.
HeadSmart showed us that awareness is hugely powerful and can accelerate diagnosis. Providing easy-to-follow, evidence-based advice will empower young people and parents to seek healthcare in a timely manner and, importantly, empower clinicians to reassure, review or refer their patients onwards.
Once the CCD data has been published, the first phase of Child Cancer Smart will launch. We hope it will optimise referral pathways and speed up diagnosis and, ultimately, improve outcomes.
From Contact magazine issue 105 | Winter 2024
