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Delays In Child Brain Tumor Diagnosis

August 7, 2009

Significant numbers of children in the UK are suffering from preventable levels of disability, particularly blindness, and premature death because of poor diagnosis of brain tumors.

A new study by scientists at The University of Nottingham’s Children’s Brain Tumor Research Centre, funded by the Samantha Dickson Brain Tumor Trust,  shows that prolonged and slow diagnosis can make long term survivors of childhood brain tumors up to 10 times more likely to suffer disability. 450 children in the UK are diagnosed with a brain tumor every year. The average time between the onset of symptoms and diagnosis in children in the UK is between two and three months, that’s up to three times longer than the rest of Europe and the USA.

David Walker, Professor of Paediatric Oncology at the Children’s Brain Tumor Research Centre, University of Nottingham, said: “Our study showed that the UK health system is the slowest system for making this diagnosis compared to reports from other countries.  It takes more than 13 weeks in the UK to make this diagnosis for half of the patients, whilst in the US and Poland this is achieved within 5 weeks.  The research also showed that symptoms increased in number and that disability increased in severity as time passed before diagnosis.  This indicates that delays in diagnosis are affecting the severity of disability for the children and young people, which can have life-long consequences. “

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Chief Executive of the Samantha Dickson Brain Tumor Trust,  Paul Carbury said: “A quarter of all childhood cancers now occur in the brain and more children are dying of brain tumors than any other cancer.  We are concerned that children in the UK are being short-changed by delays in diagnosis, which are leading to poor outcomes compared with the rest of Europe and the USA.  This is true for teenagers too, with evidence suggesting that many visit their GP numerous times before being referred.”

David Kershaw, who lost his two year old son, Jake, to a brain tumor, is angry about the slow diagnosis they suffered. He said: “There is still so much ignorance regarding the diagnosis of brain tumors. I had to fight extremely hard to be taken seriously when Jake became unwell.  It is very clear to me that more work needs to be done within the medical profession to hasten diagnosis, which will improve the long term outcome for other children.”

Brain cancer has the highest fatality rate of all childhood cancers. Research into the disease receives a fraction of the funding of higher profile cancers, The Children’s Brain Tumor Research Centre at The University of Nottingham was initiated as a result of expression of public and professional concern that the needs of children being diagnosed and managed with brain and spinal tumors was a gap in research and clinical development, linking paediatric neuroscience, clinical practice in paediatric oncology and health service strategy. The centre, initiated by public donations of £1.8m raised between 1997 and 2007, has provide a clinical academic focus to bring basic science, clinical academic researchers to apply their expertise to the needs of children with brain and spinal tumors.

The Samantha Dickson Brain Tumor Trust exists to find a cure for childhood and adult brain tumors through funding research, as well as offering support, hope and information to patients and their carers. The Trust has become the largest single funder of laboratory based brain tumor research in the UK. It has been leading the fight against this terrible disease for 11 years with a vision of finding a cure for all brain tumors.  The aims, over the next three years, are to establish a world class research program to see a step change in the desperate lack of funding for new treatments, to tackle the inequalities that brain tumor patients face in accessing promising new therapies and to increase the number of specialists working in the brain cancer field.

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