1. Parents’ Question Could we have diagnosed this earlier?

2. Comparison of public guidance formats for RCPCH Guidance for CNS tumour referral pathway Children’s Brain Tumour Research Centre University of Nottingham Wilne S, Collier J, Kennedy C, Jenkins A, Grout J, Mackie S, Koller K, Grundy R, Punt J, Walker D

4. Ranked Symptoms and Signs All Children Less than 4 years n=4171 n=332 ► headache* ► nausea and vomiting* ► abnormal gait or co-ordination ► papilloedema* ► seizures ► symptoms & signs raised ICP* ► squint ► behavioural change at school ► macrocephaly ► cranial nerve palsies (unspec) ► lethargy ► abnormal eye movements ► hemiplegia ► weight loss ► focal motor weakness ► visual or eye abnormalities ► altered level of consciousness ► macrocephaly ► nausea and vomiting* ► irritability ► lethargy ► abnormal gait / co-ordination ► weight loss ► clinically apparent hydrocephalus ► seizures ► papilloedema* ► headache* ► unspec. focal neurological signs ► symptoms & signs raised ICP* ► focal motor weakness ► head tilt ► altered level of consciousness ► squint ► abnormal eye movements ► developmental delay ► hemiplegia

5. Ranked symptomatology with NF 1 n=301 ► reduced visual acuity ► exophthalmia ► optic atrophy ► squint ► headache* ► unspecified symptoms of raised ICP* ► precocious puberty ► abnormal gait or co-ordination difficulties ► voice abnormalities ► developmental delay ► papilloedema* ► reduced visual fields

6. Presentation of CNS tumours Presentation of childhood CNS Tumours. Wilne et al Lancet Oncology 8: 685- 695 2007

7. Cohort study  4 paediatric neuro-oncology centres  139 children with a brain tumour  “Snapshot” of UK presentation and referral pathways  Look for factors associated with a long symptom interval

8. Symptom interval life table analysis 4 UK Centres n=144 2002-4 Symptom interval / days Percentage diagnosed All Median 3.3 mth < 3yr Median 3.2 mth 0 days - 6.9 years

9. Symptomatology Study Ranked by % change 4 UK Centres n=144 2002-2004 0 days - 6.9 years (mean 8.1 months, median 3.3 months) SymptomatologyOnsetDiagnosisChange Visual system17%70%53% Motor abnormality22%67%45% Cranial nerve palsies17%54%37% Behavioural change3%40%37% Nausea and vomiting28%63%35% Headache40%58%18% Endocrine / growth7%25%18%

10. Conclusions Symptomatology is determined by age, NF status Symptoms are progressive Head tilt, cranial nerve palsies, visual difficulties and endocrine / growth problems are associated with longest SI

11. Delphi Consensus DELPHI PANEL - OCCUPATION NUMBER Paediatrician34 General Practitioner22 Paediatric Oncologist34 Paediatric Neurosurgeon 19 Paediatric Radiologist3 Paediatric Neurologist35 Paediatric Ophthalmologist 9 Delphi workshop participants –Research team –4 parents –3 paediatricians –1 A+E –2 GP –2 Ophthalmologist –2 Optometry

12. Delphi process

13. Imaging X rays are old fashioned. MR is best

15. Comparison of SI – all ages

16. Pre-school Brain tumours happen...... Symptoms include persistent Vomiting Balance and walking problems Funny eye movements Lethargy or Irritability Fits or Seizures Head tilt Neurofibromatosis (NF1) If your child has these see your doctor It’s easy to diagnose a brain tumour with a brain scan

17. Pre-school Brain tumours happen...... Symptoms include persistent Vomiting Balance and walking problems Funny eye movements Lethargy or Irritability Fits or Seizures Wry neck Neurofibromatosis (NF1) If you / your child has one of these see your doctor. If two or more, ask for a brain scan. It’s easy to diagnose a brain tumour with a brain scan

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19. Brain tumours happen...... Symptoms include persistent: Headache and Vomiting Balance and walking problems Eye or vision problems Fits / Seizures Lethargy or irritability Wry neck Neurofibromatosis (NF1) If you / your child has these see your doctor It’s easy to diagnose a brain tumour with a brain scan School Age

20. Brain tumours happen...... Symptoms include persistent: Headache and vomiting Balance and walking problems Eye or vision problems Fits or Seizures Lethargy or irritability Wry neck Neurofibromatosis (NF1) If you / your child has one of these see your doctor. If two or more, ask for a brain scan. It’s easy to diagnose a brain tumour with a brain scan School Age

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22. Adolescence Brain tumours happen...... Symptoms include persistent Headache and Vomiting Blurred or double vision Slow growth or slow puberty Poor balance and co-ordination Fits or seizures Neurofibromatosis (NF1) If you have these symptoms see your doctor It’s easy to diagnose a brain tumour with a brain scan

23. Adolescence Brain tumours happen...... Symptoms include persistent Headacheand Vomiting Blurred or double vision Slow growth or slow puberty Poor balance and co-ordination Fits or seizures Neurofibromatosis (NF1) If you have one of these, see your doctor. If two or more, ask for a brain scan. It’s easy to diagnose a brain tumour with a brain scan

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25. Children’s Brain Tumour Research Centre University of Nottingham Wilne S, Collier J, Kennedy C, Jenkins A, Grout J, Mackie S, Koller K, Grundy R, Punt J, Walker D and a consensus of 170 people on the advice to be given to the public in 2009 / 10