Christine Eiser
On behalf of the CRC Child and Family Research group,
Department of Psychology, University of Sheffield,Sheffield, S10 2TP, UK. S10 2TP. UK
Treatment for childhood cancer is long and aggressive. It can even happen sometimes that children feel quite well before they were diagnosed, but much worse after they undergo diagnostic tests and start chemotherapy. During treatment, they can feel rotten, their appearance changes and they have to cope with frequent hospital trips. It is no wonder that parents and doctors sometimes question how far the child's quality of life (QOL) is affected by the whole process. Furthermore, how long will these problems last for? And importantly, can anything be done to improve the child's QOL despite treatment?
The Child and Family Research Group, funded by the Cancer Research Campaign, has been researching these questions for a number of years. We think that asking the children themselves about these things is much more important than talking to doctors or parents - after all, it is the children that are going through the treatment. This has resulted, we feel, in a better understanding of children's views about the effects of treatment on their QOL. So for example, we have found that few children mind very much about losing their hair. They are more likely to be upset about putting on weight, and they are much more upset about finger-pricks than any other diagnostic procedure. Perhaps these results are not surprising to you. To a large extent, children say that their QOL is also compromised by the way family and friends behave towards them. In particular, they hate to feel that people are talking about them behind their backs. The way school friends react is very important, and can make a huge difference to whether or not children cope with treatment.
As everyone is now convinced that the child's QOL is very important, there have been attempts to measure it precisely. Of course, it is much more difficult to measure something like QOL compared with height or blood pressure! One of the biggest problems is that QOL means something different to almost everyone. For some children, the fact that they can't go swimming because they have a line fitted is a major impact on their QOL; for other children it is no problem at all-they never did like swimming!
There are now a number of QOL measures that have been published and it is not the purpose of this article to review them. More important is to consider whether or not they may be helpful in any way for the children.
First, a potentially important role is in comparing different treatment programmes or clinical trials. When children are newly diagnosed, parents are very often asked if they agree for their child to be recruited on to a clinical trial. These trials are evaluated first in terms of whether there are differences in physical health between children undergoing different treatments, but increasingly also in terms of any differences in QOL. So ultimately the measurement of QOL should make life better for children.
Second, QOL measures are useful if we want to assess the value of an intervention. We know that return to school after diagnosis can be difficult, and therefore attempts have been made to facilitate this. So for example, in some centres, a social worker or nurse may visit the school and explain to other children about cancer. As all Health Services come under pressure to justify expenditure, it is important to know whether these activities really improve things for the children. Again, QOL is the most obvious outcome to evaluate.
Our current work involves a longitudinal study that focuses on how QOL changes during the first 2 years after diagnosis. We hope that this information will be especially useful for parents of newly diagnosed children, because it will give them an idea about how their child might react during the course of treatment. Simply knowing what to expect may be helpful, but will also enable families to plan more effectively.
We are very pleased to hear from Parent Groups or individuals about their own experiences. Further information is available on our web-site:
www.shef.ac.uk/childfamilyresearch