Brain Tumours in Children Toolkit
Over 550 children and young adults are diagnosed with a brain tumour each year in England. Brain tumours account for a quarter of all UK childhood cancers and they are the commonest cancer cause of death in children and young people. 60% of those who survive are left with life altering disability. The symptoms and signs are often non-specific and can vary widely which can make them difficult to spot.
This toolkit, created in partnership with national awareness campaign HeadSmart, brings together a range of reliable and user-friendly resources including detailed decision support tools. It is primarily aimed at healthcare professionals but also contains information and sources of support for patients and carers.
We are currently seeking opinions to understand which resources produced by the Brain Tumours in Children project have benefited GPs and patients the most. Please take our 5 minute survey to let us know your thoughts.
Quick reference guide for signs and symptoms
This section is designed to be a quick source of information and advice for healthcare professionals who are concerned about a child.
The signs and symptoms of brain tumours can be relatively non-specific, and distinguishing the children who require further assessment or referral from those who do not can be challenging. The following specific, evidence-based, decision support tools and flowchart assist in the risk stratification process and provide guidance on management.
Presenting signs and symptoms
‘The Diagnosis of Brain Tumours in Children’ guideline endorsed by the RCPCH
Situations in which a tumour may be overlooked as a possible differential diagnosis
These are some examples of potential diagnostic pitfalls which have led to a delayed diagnosis. Whilst these presentations may well not be due to a brain tumour, it is of key importance to always consider a brain tumour as part of the differential diagnosis.
- Persistent vomiting - this should not be attributed to an infective cause without corroborative findings (e.g. fever, diarrhoea, contact with others with recent similar symptoms).
- Change in the character of headache in a patient with known migraine or tension headaches – a full reassessment should take place.
- An unsteady/ataxic gait - this should not be attributed to otitis media without corroborative ear findings.
- 'Chestiness' - swallowing difficulties and recurrent aspiration should be considered as a possible cause of this.
- Vision should always be assessed even in young or uncooperative children - an optician or ophthalmology may be asked to assess if there are concerns. It is important to ensure that reports from community optometrists are communicated promptly to primary/secondary care.
- Deterioration in academic performance at school/college - always remember to consider physical causes for this.
- Pathological behaviour change in adolescence can be difficult to detect but consideration should be given to organic causes for this, especially if it is pervasive and progressive.
- Excessive urine production and excessive fluid intake – always consider diabetes insipidus.
- Growth failure - always consider a CNS cause for this, especially if it is accompanied by vomiting.
- Abnormal head position - this should not be assumed to be a musculoskeletal problem without a thorough history and examination. Always consider a neurological cause.
For further information about children's headaches, see more at NHS Choices. Also see the NICE guidance for Headaches in over 12s: diagnosis and management.
Video clips of clinical signs
This is a visual reference of some of the clinical signs which are mentioned in the decision support tools and quick reference guide.
Patient and carer resources
This section is primarily for children and young people and their parents/carers. It covers signs and symptoms as well as sources of support.
Headsmart brain tumours symptoms card [full sized PDF]
Patients & parents
Resources for children
Resources for young adults
Organisations which may be able to offer support
Training and professional development
This section contains CPD accredited e-learning packages and presentations that may serve as useful training materials.
- RCGP Free Online Learning Course
- A HeadSmart e-learning module based around case studies is currently in development - this package provides a good overview of the topic.
A number of workshops ran in early 2017 aimed at up-skilling general practitioners in the symptomatology of brain tumours in children. Entitled, 'How can we make earlier diagnosis possible when the symptoms seem non-specific?', the presentations are available to download below.
To access shared learning networks to assist you in applying practical QI methodologies to better treat this clinical area, join our QI Ready platform.
Research and further reading
HeadSmart is a national awareness campaign which was launched to amplify the impact of the RCPCH endorsed, NICE accredited guideline which was published in 2011. A range of resources for health professionals, children and parents/carers were developed as part of HeadSmart's campaign. The guideline and the resources have been fully updated in 2016.
Key research papers
- Wilne SC, Collier J, Kennedy C, Koller K, Grundy R, Walker D.
Presentation of childhood CNS tumours: a systematic review and meta-analysis
Lancet Oncol. 2007 Aug;8(8):685-95.
- Wilne SC, Kennedy C, Jenkins A,Grout J,.Mackie S,Koller K, Grundy R, Walker D
Progression from first symptom to diagnosis in childhood brain tumours: a multicentre study
European Journal of Paediatrics
- Wilne S, Koller K, Collier J, Kennedy C, Grundy R, Walker D.
The diagnosis of brain tumours in children: a guideline to assist healthcare professionals in the assessment of children who may have a brain tumour
Arch Dis Child. 2010 Jul;95(7):534-9. Epub 2010 Apr 6
- Shanmugavadivel D, Liu J F, Wilne S, Walker D.
HeadSmart: Are you Brain Tumour Aware. 2016. Paediatrics and Child health
- HeadSmart: Be Brain Tumour Aware. A new clinical guideline from the Royal College of Paediatrics and Child Health with a national awareness campaign accelerates brain tumour diagnosis in UK children—“HeadSmart: Be Brain Tumour Aware. Neuro-Oncology 18(3), 445–454, 2016 doi:10.1093/neuonc/nov187
Other RCGP cancer toolkits
The following toolkits provide additional information about cancer in primary care:
The toolkit has been developed in partnership with the Clinical Innovation And Research Centre. Please send any comments or suggestions to firstname.lastname@example.org