Background: LGS is a severe form of childhood epilepsy which is characterized by multiple seizures and cognitive impairment. Little research has previously been conducted to determine the impact of LGS on HRQL. Purpose: The study was designed to explore the impact of LGS on the HRQL of the parent and the child and to develop a conceptual model. Method: Interviews were conducted with 40 parents of children with LGS in the US, UK, and Italy. Parents were asked to provide a report on their perceptions of the HRQL of their child and also to describe the impact on their own HRQL. Thematic analysis was conducted to develop themes relating to the impact on HRQL. The themes were organized into conceptual models of the impact of LGS on the HRQL of the parent and the child. Results: LGS has a significant effect on a child's cognitive skills with some children not being able to talk. Parents often reported that the physical functioning of the child is affected, particularly in relation to mobility. In addition, children with LGS tend to have little or no social skills. Caring for a child with LGS had an extensive impact on the parents' lives. Themes included burden of care on work and social activities, social support, sense of loss, anxiety, depression and fatigue, as well as concerns about the future for their child. Conclusion: LGS has a substantial effect on the HRQL of a child with LGS as well as on the HRQL of the caregiver.
Verdian, L., Gallop, K., Wild, D., & Falconer, S. (2009). PND25 THE IMPACT OF LENNOX-GASTAUT SYNDROME (LGS) ON HEALTH RELATED QUALITY OF LIFE – A CONCEPTUAL MODEL. Value in Health, 12(3), A194. https://doi.org/10.1016/s1098-3015(10)74032-8