Avoiding missed diagnosis of child brain tumours

The presenting symptoms of a brain tumour in a child may be very non-specific, making diagnosis difficult for doctors.

Life-threatening illness is rare among children in the UK. But together with leukaemia and lymphoma, brain, intracranial and other central nervous system tumours account for about two-thirds of all cancers diagnosed in children in the UK.

It can be difficult to diagnose a brain tumour because presenting symptoms are very variable. They can occur remotely from the site of the tumour and may be confused with other more common diagnoses. Symptoms can also be intermittent or fluctuate in severity, and can often be difficult to spot on examination.

Signs and symptoms

The presenting symptoms of a brain tumour in a child may be very non-specific, and in very young children it can be difficult to obtain a clear history of symptoms.

Doctors are advised to follow the relevant NICE guidance and actively consider the diagnosis if patients have persistent symptoms - including headaches, vomiting, lethargy or changes in behaviour or sleep patterns.

NICE also states that doctors should:

"Take into account the insight and knowledge of parents and carers when considering making a referral for suspected cancer in a child or young person. Consider a referral for children if their parent or carer has persistent concern or anxiety about the child's symptoms, even if the symptoms are most likely to have a benign cause."

A very urgent referral should be considered for a suspected brain or central nervous system cancer in children and young people who present with any abnormal cerebellar or abnormality of central neurological function. An urgent referral should also be made if the primary healthcare physician is unable to undertake an adequate examination.

Avoiding delays

The MDU's advice to doctors to help reduce the risk of delay in making a diagnosis includes the following points.

  • Consider relevant guidelines, such as those from NICE.
  • Where a potential diagnosis is made with neurological signs, make an urgent or immediate referral in line with NICE guidance.
  • Be aware of the importance that guidance places on persistent parental anxiety as a reason for referral.
  • Try to maintain some continuity of care if possible, and be wary of patients who have multiple consultations about differing or changing symptoms.
  • Consider whether clusters of signs and/or symptoms could be related, even if at first they don't appear to be.
  • Document a thorough history and details of your examination in the patient's records, along with the differential diagnosis and management plan, and record relevant negative findings as well as positive ones.
  • With remote consultations, have a low threshold for seeing the child face-to-face if you have concerns or need to carry out a physical examination.
  • Make patients and/or their parents/guardians aware of the importance of a further medical consultation should their symptoms not resolve. You might like to consider putting in place a computerised warning system to flag up patients for whom you have concerns to remind you to follow them up.
  • If a diagnosis is missed or delayed, apologise to the patient and/or their family, explain what happened and what you propose to do to put things right, if possible.
  • Have an adverse incident system in place, to analyse any delay in diagnosis or other problem which may occur. This will allow lessons to be learnt and avoid similar delays in the future.

This page was correct at publication on 16/03/2022. Any guidance is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.

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