Abstracts

Rationale: Children who have undergone hemispherectomy procedures experience variable neurological deficits including hemiparesis, visual, language and cognitive difficulties depending on their preoperative status and the underlying etiology. While previous research has investigated seizure control, physical and cognitive abilities in these children, to date no studies have examined the overall quality of life. In order to counsel families in a meaningful way and to continue providing appropriate care as these children mature, we have begun a study to evaluate the impact of the procedure on long-term outcome. As part of this study, we have characterized quality of life (physical, emotional status, social skills and cognitive abilities) using the Pediatric Quality of Life Inventory, Version 4.0 and examined its relationship to etiology and seizure control. Methods: All the children who underwent hemispherectomy surgery between the ages of 1- 19 at our hospital were identified. The contactable families were sent a package of questionnaires after obtaining consent by phone. The package included an age appropriate Peds QL 4.0 (Pediatric Quality of Life Inventory Version 4.0) i.e., Parent report for age 2-4, child report for age 5 to 18 and parent proxy report for age 5 to 18. For the current study, we used the parental report for all the ages as they are comparable with children reports in previous studies. Results: Among the 67 families that are presently contactable, 31 (46%) responded. The mean age was 16 yrs (range 2 to 26 years), 17 were female (54%). The children were followed between one to 22 years (mean =9 years). In terms of underlying pathology, 10 (32%) patients had Rasmussen’s syndrome, 17 (55 %) had a unilateral malformation of cortical development, and 4 (13%) had unilateral vascular insult. Total seizure remission was noted in 17(55%). There was a significant difference between the types of underlying pathology in terms of quality of life (one-way analysis of variance, p= 0.018). Quality of life scores were not significantly different between patients whose seizures were or were not controlled (Student’s t-test, p=0.25 under 18yrs, p=0.685 >18yrs). Linear regression analysis did not show any correlation between time since surgery and quality of life score (p=0.17). Conclusions: Underlying pathology seems to be an important determinant in the quality of life in post hemispherectomy children. Children with Rasmussen’s and unilateral stroke had better quality of health scores when compared with children with cortical malformations. Seizure control and time since surgery did not affect the quality of life.