Headsmart: Promoting earlier diagnosis of brain tumours in children

  • Led by Dr David Walker, Professor of Paediatric Oncology, and Dr Sophie Wilne, Senior Trainee in Paediatric Oncology, at Nottingham University.
  • Run by Nottingham University's Children's Brain Tumour Trust in partnership with the Samantha Dickson Brain Tumour Trust and the Children’s Cancer and Leukaemia Group.
  • Aimed to ensure earlier diagnosis of brain tumours in children, to reduce the risk of death or long-term brain damage.
  • Developed a public and professional awareness campaign and a web-based decision support tool.

Child brain tumour diagnosis in the UK takes up to three times longer than in other countries. Children are often unwell for two to three months before diagnosis and not diagnosed until they are at risk of death, or of severe neurological damage.

This project aimed to reduce the amount of time from the initial presentation of symptoms to the diagnosis of brain tumour in children, to reduce the risk of death or long-term brain damage.

Key findings

  • The campaign was successful in raising awareness of symptomatology among doctors and has raised their confidence in making a diagnosis.
  • Surveys after the launch showed 11% of the public were now aware of the campaign.
  • Clinical champions in cancer units have measured the time it takes for diagnosis (symptom interval) over the past year and have shown a significant reduction from pre-campaign levels.
  • However, the symptom interval was falling before the campaign and other factors may also have had an effect.

Challenges

  • Rarity of childhood brain tumour means it is hard to make it a priority.
  • It was difficult to get support from the Royal College of General Practitioners.
  • Risk of raising awareness enhancing public anxiety was a concern.
  • Maintaining the engagement of a wide range of stakeholders was a challenge.

Who was involved?

The project was run by experts at Nottingham University's Children's Brain Tumour Trust in partnership with the Samantha Dickson Brain Tumour Trust and the Children’s Cancer and Leukaemia Group. It was supported by the Royal College of Paediatrics and Child Health. 

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