Giving children a better quality of life after a brain tumour

Brain Tumour UK and the Samantha Dickson Brain Tumour Trust are funding this work.

If ten children have a brain tumour, how far should doctors go to help them survive? 'As far as possible' is not necessarily the right answer.

Imagine that treatment X alone might ensure that six out of the ten children will survive, whilst treatments X and Y together will help seven children survive. But with treatments X and Y, all seven surviving children will have a significantly worse quality of life than if they had had treatment X alone and only six had survived.

The doctor’s dilemma is huge: is it right to significantly reduce the quality of life of six children in order to save the life of a seventh?

Professor Colin Kennedy has compared two groups of children who developed a medulloblastoma – the most common brain tumour amongst children. Some received cranio-spinal irradiation (CSI) alone whilst others received both CSI and chemotherapy. Children who received both treatments had 'significantly' worse health, more behavioural and emotional problems, and a poorer quality of life than those children who received CSI alone.

Now, with help from Brain Tumour UK, Colin and PhD student Kim Bull are looking at a specific group of children aged eight to 14 who had medulloblastomas or benign astrocytomas in the cerebellum region of the brain. Both groups of children had surgery to remove the tumour, but only the first group also had radiotherapy and chemotherapy.

'By comparing these two groups we can find out what the effects of this additional treatment are on the quality of life of those treated for a medulloblastoma,' says Professor Kennedy.'We can also explore other factors that affect quality of life that might be amenable to change.'

One challenge is defining quality of life: 'It’s affected by lots of things such as health, household income and personal relationships. Quality of life is a funny mixture of clear facts such as your health status and less precise information such as how comfortable you are in social situations,' explains Colin.
Kim is collecting and analysing the information from families, the children and clinicians. 'I really enjoy working with the families. They really do want to help by taking part. It’s giving something back: they are so grateful for the treatment they have had for their child.'

The current study runs until early 2010, with Kim collecting new information every 12 months for three years. This long-term information helps us to see which problems are short term and which are long term and need attention.

Kim has already found that children with malignant tumours go on to have a worse quality of life than those with benign tumours, whilst both groups have a worse quality of life than children with no tumours at all. That might not sound surprising, but precisely why do these differences exist?

'Children get tired and their ability to grasp and process information has been affected to different degrees,' says Kim. 'A child often has 18 months off school for treatment. They have difficulty integrating back in and the school doesn’t usually have the support that the child needs. Their friends lose interest in them, their balance is compromised and they find it difficult to get around. That’s incredibly tough for a child.'

Kim has also found that the mental health of the child’s parents has a significant effect. But both these findings are good news. They suggest that if a child gets better support at school and the parents get better support in dealing with the family trauma, then the overall quality of life of the child can be significantly improved.

'We can’t alter the fact that children may need aggressive treatments,' says Kim, 'but we can ultimately try to improve other aspects of their lives that may impact on their quality of survival.'