The pathways project

Dr Sophie Wilne, from Birmingham Children’s Hospital, explains about a new initiative involving specialists from Birmingham, Nottingham and Southampton called The Pathways Project: Improving the diagnosis of brain tumours. 

Cancer is fortunately rare in children. One of the consequences of this, however, is that many doctors may find it difficult to recognise when a child or young person comes to see them with symptoms that are caused by a tumour. This is particularly a problem with brain tumours. The symptoms caused by brain tumours vary greatly. Tumours in different parts of the brain will cause very different symptoms, and young children develop different symptoms to older children and young adults. The challenges of diagnosing brain tumours are added to by the fact that many of the initial symptoms caused by brain tumours e.g. headache, feeling sick, feeling worn out, also occur with many other much less serious and more common childhood illnesses. Many children and young people with brain tumours are, therefore, unfortunately unwell for several weeks or months before the tumour is diagnosed. Families sometimes feel that a diagnosis was only made as a result of their insistence that something was wrong, which can be a very distressing experience. Research also suggests that children and young adults with brain tumours who are unwell for a long time before the tumour is diagnosed may experience more tumour-related problems in later life. 

The Pathways Project was set up with the aim of improving the diagnosis of brain tumours in children and young people. With the support of the Samantha Dickson Brain Tumour Trust, the project team developed a guideline to help doctors recognise and investigate children and young people who could have a brain tumour. Many
people contributed to the developmen of the guideline including patients and their families, many of the oncologists working in CCLG centres and doctors working in many other areas, including in general practice. The final guideline gives information on what symptoms occur with brain tumours and advises doctors on how to determine whether or not a child or young person has a brain tumour.

The guideline is freely available on the Internet (website below). A guideline is only any good if it reaches the people who need it, in this case doctors and other health care professionals who look after children and young people. The process by which a guideline reaches those who need it is called implementation. The Pathways Project has been awarded a grant from the Health Foundation to support implementation of the guideline. We believe that patients and parents are some of the best people to educate doctors and therefore part of the grant will be used to inform people about what symptoms brain tumours cause in children and young people and when they should discuss these symptoms with a doctor.



The other really useful tool for implementation is the Internet. Many people turn to the net for information when they are worried about their health and it
has sometimes helped parents and doctors in the diagnosis of a brain tumour. We are planning to develop a website that will give parents and young people information about brain tumours and that will also provide a source of information and advice for doctors. We are delighted that the Royal College of Paediatrics and Child Health has agreed to join us to support the implementation process.

This work will take place over the next twelve to eighteen months - so look outfor more on the Pathways Project in the near future. If you are interested in this project or have been affected by any of the issues discussed here, further information and support can be obtained from the Samantha Dickson Brain Tumour Trust. They can be contacted on 0845 130 9733, by email at enquiries@sdbtt.co.uk or via their website www.braintumourtrust.co.uk