Families' Knowledge Change in Paediatric Drug Resistant Epilepsy: A Novel Clinic Model

Abstract

Background: Epilepsy is a chronic condition that affects approximately 95,000 Ontarians, of whom approximately 15,000 are children under the age of 18. Drug resistant epilepsy (DRE) will affect around 30% of these children who will require more advanced care due to their medical complexities. The purpose of this study is to determine if receiving care in a paediatric Comprehensive Epilepsy Clinic (CEC) is associated with positive outcomes for children living with DRE and their families by looking at three health outcomes: 1) families' knowledge of their child's diagnosis and treatment plan, 2) navigational access to both the hospital and community epilepsy services, and 3) health behaviours.

Methods: This was a prospective cohort study in which families of children diagnosed with DRE would be exposed to a CEC care model for the first time and followed for 6-months after enrollment. This was analyzed by utilizing surveys from new families at baseline and 6 months post receiving care within a CEC.

Results: Results revealed a statistical significance in change of knowledge in families' knowing the type of epilepsy their child has and what epilepsy co-morbidities are. Families' also had a significant change in utilizing hospital epilepsy resources and knowing who to contact in the community and hospital for their epilepsy related questions.

Conclusion: A CEC model improves families' knowledge about epilepsy diagnosis and treatment plan, navigational access to both the hospital and community epilepsy services, and health behaviours.

Keywords: Children; Comprehensive epilepsy clinic; Drug resistant epilepsy; Knowledge change.