Q1 How common are childhood brain tumours?
Every year in the UK, around 1,600 children (under 15) are diagnosed with cancer. Brain tumours account for one-fourth of these childhood cancers and are the leading cause of cancer-related deaths in children affecting about 450 children (under 16) each year. NICE (2005) guidelines entitled Improving Outcomes in Children and Young People with Cancer is a useful resource for primary and secondary care health professionals and provides a concise summary of the common modes of presentation of brain tumours in children. It enables selection of those for reassurance and others for review or referral using an evidence-based
strategy (NICE, 2005). By using the HeadSmart Symptom card, community practitioners such as health visitors, school and nursery nurses, along with other
public and health professionals, can assist with flagging up cases for consideration.
Q2 What are the risk factors?
Community practitioners need to be aware that certain children have a higher risk of developing a brain tumour. When dealing with such children, community practitioners should have a lower threshold for seeking a professional opinion.
Q3 Why does it typically take longer to diagnose brain tumours in the UK than in other countries?
Studies by different groups have shown that in the UK, on average, it takes between two and three months from the onset of symptoms to diagnose brain tumours in children. This total diagnostic interval is three times longer than other countries, such as Poland and North America. Diagnosis can be extremely difficult as the initial presentation is known to mimic other more common and less serious conditions. In a UK population-based retrospective analysis of primary care records, 195 children (aged one to 14 years) with newly diagnosed brain tumours had 31.5 visits to the GP when compared with 285 controls (matched by age, gender and region) who had visited 25.6 times; these excess attendances were largely related to brain tumour relevant symptoms. HeadSmart UK has identified that delays in the total diagnostic interval can occur at different stages for a variety of reasons according to a recent consensus conference.Although brain tumours in children are surprisingly not uncommon, diagnosis isn’t necessarily always swift. Dr Siba Prosad Paul and Professor David Walker answer ten essential questions on children’s brain tumours, from risk factors, diagnosis and treatment to the role health professionals in the community can play in early detection and emotional support:
Q4 What are the symptoms?
Different studies have demonstrated that the three most common brain tumour symptoms are: headache, vomiting and unsteadiness. However, in younger children under four, behavioural changes are most commonly noted. Due to this variable nature of symptoms based on age, the HeadSmart campaign was launched with an aim to reduce the time taken to diagnose so that half of all children and young people with a brain tumour are diagnosed within six weeks of developing initial symptoms. The symptom card ‘HeadSmart: be brain tumour aware’ is a valuable resource and should be used when a child has brain tumour symptoms, and this will ensure an early referral to specialist services.
Q5 How are brain tumours diagnosed and treated?
Brain tumours in children can present with age specific symptoms and it is important that community practitioners enquire about these symptoms. Any suspicion needs an immediate discussion with a medical professional (preferably local paediatricians), followed by a referral. At the hospital, children with signs of raised intra- cranial pressure (eg. vomiting, headache, visual difficulties, altered consciousness) will be stabilised and an urgent computed tomography scan will be arranged. However,if the child is considered to be stable, an MRI scan is a better imaging option. Following a diagnosis, the child will be managed by multi-specialty teams consisting of neurosurgeons, paediatric oncologists, paediatricians, community oncology nurses etc. The current management for brain tumours include surgical removal (most cases) coupled with adjuvant therapies, such as radiation therapy and chemotherapy.
Q6 What are the complications?
The latest treatments have improved the chances for children with brain tumours. The overall five-year survival is 70%, with more than 50% surviving long term. However, 60% of survivors have moderate or severe disability. Children who have experienced symptoms for longer before diagnosis are more likely to develop irreversible neurological deficits (particularly visual loss and endocrinopathies) and are more likely to show greater cognitive deficits and learning difficulties in later life. However, children who present acutely with life threatening symptoms are rapidly diagnosed and may suffer fewer long-term complications. Common post-treatment complications are: intellectual decline, growth hormone deficiency, permanent neurological disabilities, reduced bone density (increased risk of fractures) and a greater risk of developing a second brain tumour in the next ten to 20 years.
Q7 What about the impact on families?
A brain tumour diagnosis can present a sudden and often unexpected challenge for most families. Initially, they may find it difficult to understand and actually accept the diagnosis. In addition, they are faced with the need to be transferred to regional oncology centres for immediate treatment even before they have come to terms with the diagnosis. Parents would need to juggle childcare (for other siblings), family life, regular travel to the regional oncology centre (to continue treatment) and time off work. For most families, the financial constraints are likely to add to their list of challenges which often remain hidden. Community practitioners can help by arranging respite care for parents, guide them towards available financial help and ensure that.