Abstracts

RATIONALE: In our clinical experience, children and adolescents often express high expectations for improved physical, psychological, cognitive and social well-being after epilepsy surgery. Yet, studies on postoperative quality of life rarely elicit the child or adolescent[ssquote]s viewpoint. The purpose of this study was to obtain perceptions of youth regarding the impact of epilepsy surgery on their quality of life (QOL).
METHODS: A cohort of 51 children (mean age = 12.5 , range 7-18 years) with intractable seizures were recruited from an epilepsy-monitoring program. The present data were obtained using ethnographic interviews with surgical candidates (n = 30) prior to surgery and one year later. A comparison group (n = 21) was interviewed twice, also with one year between the interviews. Following transcription of the interviews, content and thematic analyses were undertaken. Frequency (%) and salience of themes were determined, with additional comparison of surgery and control groups.
RESULTS: Groups were comparable in age, age of seizure onset, proportion of life with seizures, number of medications, and did not differ statistically in IQ. At baseline, both groups indicated high rates of physical, cognitive, and psychosocial distress. Youth who were most troubled at baseline had high expectations that surgery would improve their QOL, particularly if seizures remitted. While some of the surgical youth identified positive changes such as less fatigue, more energy, improved memory, more independence and improved self-confidence, others reported little or no change, and a few described a decline in their QOL. Both seizure free and non-seizure free surgical youth were represented in each of these categories. Youth in the comparison group reported few positive changes, with most indicating no change or a worsening of their QOL.
CONCLUSIONS: Overall, the findings suggest that the expectations children and adolescents have for gains in QOL within the first year after surgery should be discussed prior to surgery as these views may be unrealistic and contribute to a sense of dissatisfaction. This study is unique in that it supports our view that children are excellent informants and able to identify salient aspects of their QOL. Furthermore, baseline interviews provided data with which to compare post-surgery outcomes (with a comparison group).
At the end of this presentation participants should be able to discuss the complex processes involved in post-surgical adjustment of children and adolescents.
[Supported by: the Ontario Mental Health Foundation]