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.

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.

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.

Regional workshops

Non-specific symptoms in children and young people: are you HeadSmart?

This workshop is aimed at up-skilling general practitioners in the symptomatology of brain tumours in children. How can we make earlier diagnosis possible when the symptoms seem non-specific?

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

Other RCGP cancer toolkits

The following toolkits provide additional information about cancer in primary care:

  • Primary Care Cancer toolkit Provides a collection of key evidence-based resources about cancer prevention, diagnosis and care.
  • Consequences of Cancer toolkit Provides resources and information for primary care professionals to identify and manage the consequences of cancer treatment, and support patients to live well after a cancer diagnosis.
  • Early Diagnosis of Cancer Significant Event Analysis toolkit Developed to support GPs, practice staff and commissioners in conducting high quality cancer SEAs with the aim of improving patient outcomes in the early diagnosis of cancer.

The toolkit has been developed in partnership with the Clinical Innovation And Research Centre. Please send any comments or suggestions to circ@rcgp.org.uk

The item has been added to your basket.

Continue shopping

Go to basket

This item is out of stock.

Continue shopping

The item is out of stock.

Yes Continue shopping

An error occured adding your item to the basket:

Continue shopping