To an outside observer, the reduction, or even complete elimination of epileptic seizures should surely be immediately followed by a major improvement in quality of life. But prevention of seizures by any available means does not follow such an obvious pattern. Chronic epilepsy may detrimentally affect many people’s psychosocial experience. The enormously invasive solution of surgery for adults often leaves them seizure-free but confronting an entirely new set of problems, such as severe depression.

What, then, are the outcomes for children? Of course, surgery is only indicated for children with intractable epilepsy, where all medications have failed. These children are severely impaired by repeated seizures - surgery is the last hope for a more ‘normal’ life. Statistics for children who have temporal lobectomies to control complex partial seizures are good: approximately 70% will become seizure free or have significant improvement. That is promising enough to convince many parents that surgery is a good option, rather than see their child continue to suffer. Anecdotal evidence shows that other families postpone surgery as it is too invasive - they hope for improvements through new medications or the possibility that the child will just ‘outgrow’ their seizures.

In many cases, consideration of surgery is often delayed to adolescence, when the usual teenage ‘stresses’ may be overwhelming enough without the addition of an extended hospital stay. An indirect result of this study will be a new look at the issue of the timing of epilepsy surgery; clinical practice will be informed and the findings may be used to guide parents as to the most suitable ages for surgical intervention. However, the main focus is a richly qualitative study of psychosocial outcomes for both children and their families. Through the exploration of a large number of cases, neurologists can use the results to aid in pre-operative selection, identifying which families are most at risk and will require counselling. Just as importantly, the results will help in post-operative psychosocial management by the hospital as well as the usual adjustment of medications.

Although there is plenty of information available on outcomes for adults, much less is documented on psychosocial outcomes in children. We need to know if there are changes in behaviour or mood swings, if there is depression or difficulty in social interaction, how the family dynamics change. Given that there are many psychosocial problems for adults after epilepsy surgery, we should find out whether young children have fewer problems, and how adolescents respond to the inevitable changes in their life. Cases will be drawn primarily from Austin Health and the Royal Children’s Hospital in Melbourne. Other families may join where hospitals and type of surgery meet the criteria for this study.

If the findings are to be of real value to the planning and practice of neurosurgery, the study must be prepared and undertaken with extreme thoroughness, especially as it has to be mainly quantitative. The first six months of the research, which is funded by the Epilepsy Association, have been spent in becoming thoroughly familiar with related findings around the world. This was aided by a travel scholarship, also awarded by Epilepsy Association, which allowed me to attend the 25th International Epilepsy Congress in Lisbon, Portugal (report, p9). Many presentations at this conference were particularly relevant to my research. These included new findings on paediatric epilepsy surgery, psychosocial adjustment and quality of life.

Combining existing literature with established psychosocial research criteria has enabled me to focus my research questions and hypotheses. We need to begin with some hypotheses, knowing that further research may prove these wrong. What I anticipate, from looking at adult surgery outcomes, is that adolescents may have more trouble coping with post-operative rehabilitation than younger children, but less than in adults. This could be partly due to the fact that younger children are not fully aware of the detrimental effects of seizures, because they have had to live with epilepsy for fewer years. If the study shows a significantly smoother adjustment for young children, then the timing of surgery will be an important issue.

Much of this research will be carried out through interviewing of both children undergoing surgery and their families. This will be undertaken at pre-operative and post-operative stages, as well as retrospectively. Results aim to help in the counselling of families and children both before and after surgery, and to ensure that the results of surgery have maximum benefit.

The average age for children undergoing surgery for complex partial seizures is eight years. How do such young children cope with the idea of surgery? How do their parents, siblings and the wider family cope? Extremes of attitude to this most confronting suggestion by their neurologist are expected: some will be most anxious while others look forward to a better future and approach it positively. Children and their families will be asked where they are now and where they hope to be afterwards, what effect surgery is expected to have; participants can contribute their experiences of what, in fact, happened that was the same or different to expectations.

Whatever the final outcomes, this research is expected to help all patients by preventing the accumulation of psychosocial difficulties that can accompany chronic, uncontrolled seizures. It will also point to the need for a pre- and post-operative follow-up and rehabilitation program for young epilepsy surgery patients and their families. n

Silvana Micallef is Clinical Neuropsychologist at Austin Health; PhD student; 2003 Epilepsy Association Research Scholarship Recipient.