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

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.

A Shared Decision-Making Process Utilizing a Decision Coach in Pediatric Epilepsy Surgery.

BACKGROUND & RATIONALE: The process to evaluate candidacy for epilepsy surgery is lengthy and stressful for caregivers, therefore the decision can be challenging. There is not a lot of information in regard to how families of a child living with epilepsy navigate the stressful decision during surgical candidacy evaluation. With difficult decisions comes the possibility of increased decisional conflict in both the child and the family. METHODS: A project designed to provide greater knowledge to the family was conducted utilizing the shared decision-making (SDM) process to assist families in the decision-making during surgical candidacy evaluation; this was done using a decision coach, who is an unbiased health care professional, providing families with evidence-based information and support tools while supporting them in making decisions based on their values. RESULTS: Results reveal that 90% (45 of 50) of families offered a consult with the decision coach agreed to participate. For these families, 78% (35 of 45) felt they were ready to move forward with surgery after the consult and 22% (10 of 45) felt they needed more information and testing. There was a significant improvement in the level of decisional conflict, uncertainty, and perception of preparation for decision making for the caregivers between the first and second consult, although 60% of families did not complete the postconflict survey. CONCLUSIONS: The SDM process assists families in their need for more knowledge regarding risks, benefits, and options for treatment before making a surgical choice. SDM utilizing an impartial decision coach outside the direct circle of care and individualized epilepsy surgery education aids improves parental decision conflict and satisfaction.