LIFE AFTER VNS: PARENTS' PERSPECTIVES OF QUALITY OF LIFE IN CHILDREN WITH DEVELOPMENTAL DELAY AND EPILEPSY AFTER IMPLANTATION OF A VAGAL NERVE STIMULATOR

Objectives: To identify parent perceptions of quality of life changes in children with developmental delay and epilepsy after implantation of a vagal nerve stimulator and to investigate the relationship between reported quality of life changes and perceived changes in seizure frequency and duration following VNS placement.

Methods: A qualitative approach was used to study aspects of quality of life (physical, affect/behavior, social, cognition and family interaction) in a convenience sample of 6 parents whose children had undergone VNS insertion in the last 12–36 months. All children had moderate to severe developmental delay. A semi-structured interview was used to gather data, with questions designed to elicit information about each of the quality of life domains. The interviews were transcribed verbatim and then analyzed for themes and sub-themes. Seizure histories were also collected from parent reports and clinic charts.

Results: Although no children achieved complete seizure freedom, parents expressed decreased vigilance associated with a perceived reduction in seizure frequency or severity. Other themes that emerged included increased alertness and responsiveness to family and environment. This resulted in more time spent with the child and an increase in family cohesion.

Conclusion: Children with moderate to severe developmental delay demonstrate quality of life changes associated with epilepsy treatment. This study highlights the importance of exploring quality of life outcomes in this population and may assist in the development of a more comprehensive quality of life assessment tool for children with epilepsy and moderate to severe developmental delay.