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University of Nottingham
BIRMINGHAM CHILDREN’S HOSPITAL, & SOUTHAMPTON HOSPITAL
(Dr D. Walker, Dr. R. Grundy, Dr. Colin Kennedy)

Pathways to diagnosis of brain and spinal tumours in children and young adults

2 year project with grant funding of £105,204 funded by Big Lottery Fund
2004 - 2006

This two year project has completed its first year and excellent progress has been made. The aim is to develop guidelines to advise healthcare professionals on the indications for specialist referral and imaging of children who have symptoms that could result from a brain or spinal tumour. The first stage was to search the English language literature from 1996 - 2004. Data was available on tumour locations in 1221 patients and 68 signs and symptoms were identified as occurring in children with brain tumours. The second phase is to connect data from 142 children presenting with a CNS tumour from Birmingham, Nottingham and Southampton. This will be compared with symptoms produced in the literature and the data will be used to draft the guidelines. Professional expertise and peer review will be incorporated into the guidelines (via a Delphi consensus process), (funded by Big Lottery Fund).

The duration of symptoms prior to making a diagnosis of brain and spinal tumours, often far exceeds that of other cancers. The reasons for this delay are to be linked to issues surrounding medical training, timely access to specialist scanning of the brain and lack of clarity about referral pathways between doctors.

The Purpose of this research is to:

1) Establish a prospective clinical database of symptoms, their duration and clinical pathways of referral of a year’s worth of new patients with brain and spinal tumours from three UK, regional children’s brain and spinal tumour centres.

2) To identify differences in interpretation of clinical history and examination findings between neurological/neuro-oncology specialists and non-specialist health care professionals regarding the symptoms which indicate the need to investigate for brain or spinal tumour or other structural abnormality of the brain and spine.

3) To develop and publish clinical guidelines for history and examination aimed at selecting patients worthy of brain imaging aimed at diagnosing or excluding brain and spinal tumour or other acquired structural abnormality, as soon as possible.

4) To use the database and clinical guidelines to justify a national audit of symptom duration and clinical pathways of referral for all children with brain and spinal tumour through the registration process of UK Children’s Cancer Study Group’s brain and spinal tumour centres.

5) To develop a training focus for postgraduate medical trabess who will be leaders in children’s health services by funding a Samantha Dickson Research Training Fellowship as well as through the publication of the findings of this research project.

If earlier diagnosis is achieved, it will improve survivability rates in children with brain cancer, and reduce problems associated with memory, concentration and thinking processes associated with late diagnosis.

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