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Delays in UK Child Brain Tumor Diagnosis

  • Published: 2009-08-07 : Author: University of Nottingham
  • Synopsis: UK children are suffering from preventable levels of disability particularly blindness and premature death due to poor diagnosis of brain tumors.

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A new study by scientists at The University of Nottingham's Children's Brain Tumor Research Center, 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.

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 Center, 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 Center, 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."

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 Center 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 pediatric neuroscience, clinical practice in pediatric oncology and health service strategy. The center, 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.

Reference: More than 90 per cent of research at The University of Nottingham is of international quality, according to RAE 2008, with almost 60 per cent of all research defined as 'world-leading' or 'internationally excellent'. Research Fortnight analysis of RAE 2008 ranks the University 7th in the UK by research power. In 27 subject areas, the University features in the UK Top Ten, with 14 of those in the Top Five.

The University provides innovative and top quality teaching, undertakes world-changing research, and attracts talented staff and students from 150 nations. Described by The Times as Britain's "only truly global university", it has invested continuously in award-winning campuses in the United Kingdom, China and Malaysia. Twice since 2003 its research and teaching academics have won Nobel Prizes. The University has won the Queen's Award for Enterprise in both 2006 (International Trade) and 2007 (Innovation "School of Pharmacy), and was named 'Entrepreneurial University of the Year' at the Times Higher Education Awards 2008.

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