A world-first in paediatric cancer research

The UK’s performance on diagnosing brain tumours in children and young people has been transformed by new clinical guidelines and a national awareness campaign – taking it from one of the worst ranking countries in the world to one of the best. 

Researchers at Nottingham, who developed the new clinical guidelines in 2008 and publicised their message through the HeadSmart: Be Brain Tumour Aware campaign in 2011, have published an academic paper which confirms that the campaign is associated with a reduction in diagnosis times from an average of 14 weeks to just 6.7 weeks in its first two years. 

Brain tumours account for one-quarter of all childhood cancers, affecting one in 2,400 children under the age of 16 annually in the UK. A national survey in 2006 revealed that UK referral practice ranked poorly in international comparisons, which resulted in the new NHS referral guidelines which were published in 2008. 

To support the new guidelines, the Royal College of Paediatrics and Child Health worked with the Children’s Brain Tumour Research Centre in Nottingham and the Brain Tumour Charity to develop the HeadSmart campaign, which aimed to reduce diagnosis times to just five weeks. 

A HeadSmart website was developed, offering complementary guidance for healthcare professionals on which symptoms required timely review or immediate imaging, with an emphasis on reassuring patients and providing information in a clear, accessible way. The campaign also produced a range of awareness materials for healthcare professionals – including a handy symptom checker which could be used during consultations. 

The materials were also taken directly to the general public through a range of channels including local schools, nurseries, hospital waiting rooms, local authorities, and charities. 

Clinical champions at 17 Children’s Cancer and Leukaemia Group treatment centres submitted data on 710 patients’ dates of symptom onset, dates of initial presentation to healthcare and the dates of diagnosis for both pre- and post-campaign. 

The results showed that the average time it took for patients to be diagnosed fell from an average of 14 weeks before the campaign to 6.7 weeks in the second year after the campaign was launched. In addition, the change in referral practice was notable in the time it took from first medical contact to the patient being sent for neurological imaging, which reduced from 3.3 weeks to 1.4 weeks. In surveys used to assess the impact of the campaign on healthcare professionals, 54% of paediatricians said they felt more confident about diagnosing brain tumours compared to 32% before the campaign launched. 

The campaign has also helped to educate members of the public about the symptoms of brain tumours. Fay Wright, whose son Luke was successfully treated for a brain tumour in 2013, used the HeadSmart resources to check her son’s symptoms. She said: “The HeadSmart information crystallised everything. It made me think about all of his symptoms differently. It gave me what I needed to go to the GP and say: ‘I’m really worried’”.  

 

The campaign is now due to be relaunched in 2016 with a focus on raising awareness further among GPs and teenagers, with the aim of reducing diagnosis time again to hit the national benchmark of 4 weeks. 

Dr Jan Dudley, Royal College of Paediatrics and Child Health, and Executive of HeadSmart project board said: “The progress made by the HeadSmart campaign in reducing diagnosis times on brain tumours is wonderful to see.” 

“We still lag behind some of the best performing nations in the time taken for brain tumours to be diagnosed however. The relaunch of the HeadSmart campaign will hopefully see the UK overcome this deficit, making us an example of excellence in diagnosis times for brain tumours.”

Although the HeadSmart campaign has had great success in reducing diagnosis times, brain tumour research remains under-funded, receiving just 1.5% of the national spend on cancer research. 

We’ve launched a Christmas appeal to fund vital research into a pioneering new treatment that targets cancer cells more effectively without producing some of the unwanted side effects of conventional chemotherapy that can lead to life-changing disabilities for some children who survive brain tumours. We need to raise £50,000 to ensure the next phase of this research can go ahead and make this new targeted treatment a reality. 

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