Brain Tumours in Children Toolkit

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.

• The diagnosis of brain tumours in children: a guideline for healthcare professionals

Presenting signs and symptoms

• Persistent/recurrent headache
• Persistent/recurrent vomiting
• Abnormal balance/walking/coordination
• Visual symptoms (blurred/double vision, abnormal eye movements)
• Behavioural change
• Delayed or arrested puberty
• Seizures
• Abnormal head position
• Increased head circumference

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.

This is a visual reference of some of the clinical signs which are mentioned in the decision support tools and quick reference guide.

• Jake (head tilt) and Sarah (vision loss)

The following display some specific symptoms.

• Left facial palsy
• Left sixth nerve palsy and nystagmus
• Ataxic gait - heel-toe walking
• Dysdiadochokinesis
• Intention tremor and past pointing

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

• Additional information for parents and carers from HeadSmart and Teenage Cancer Trust
• The Brain Tumour Charity: Get Support pages
• The Brain Tumour Charity: Understanding Brain Tumours pages
• The Brain Tumour Charity: brief overview of the types of brain tumours which occur in children
• The Brain Tumour Charity: jargon buster
• Brainstrust: resources and support
• NHS Choices information about children's headaches

Resources for children

• The Brain Tumour Charity: Jake animations Animations about brain tumours, scans, chemotherapy, radiotherapy, neurosurgery, steroids, mummy has a brain tumour, my brother has a brain tumour
• Brainstrust: Little brain box
• Brainstrust: Snaggle Tooth Splat A guide to help families discuss a brain tumour diagnosis with children

Resources for young adults

• HeadSmart information for teens and young people
• Teenage Cancer Trust I think I might have cancer
• Teenage Cancer Trust Young person's guide to cancer

Organisations which may be able to offer support

• The Brain Tumour Charity
• The Brain Tumour Charity: Facebook Support Group
• Brain Tumour Support the only brain tumour charity to offer one to one on-going support to those affected
• Brainstrust 24/7 coaching-led support by email or phone
• Cancer Research UK
• Macmillan
• Children’s Cancer and Leukaemia Group (CCLG)
• CLIC Sargent

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

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.

• Non-specific symptoms in children and young people: are you HeadSmart?
• An introduction to the RCGP Brain Tumours in Children toolkit
• Why HeadSmart? The story behind childhood brain tumour early diagnosis campaign
• Summary

Quality Improvement

To access shared learning networks to assist you in applying practical QI methodologies to better treat this clinical area, join our QI Ready platform.

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.

• The story of the HeadSmart campaign so far
• Full NICE accredited RCPCH guideline
• Relevant NICE guidance "Children and Young People with Cancer"

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:

• 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.