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Published on: September 20, 2024
Families' Knowledge Change in Paediatric Drug Resistant Epilepsy: A Novel Clinic Model
Michelle Kregel1, Sherry Coulson2, Maryam Nabavi Nouri3
1Children's Hospital, London Health Sciences, 800 Commissioners Rd E, London, Ontario N6A 5W9, Canada; Lawson Health Research Institute, 750 Baseline Rd E, London, Ontario N6C 2R5, Canada.
Insights
A paediatric Comprehensive Epilepsy Clinic (CEC) care model significantly improves knowledge about epilepsy diagnosis and treatment for families. It also enhances access to hospital and community epilepsy services, positively impacting health behaviors.
Area of Science:
- Pediatric Neurology
- Epilepsy Management
- Health Services Research
Background:
- Epilepsy affects 95,000 Ontarians, including 15,000 children.
- 30% of children with epilepsy have drug-resistant epilepsy (DRE), requiring complex care.
- Paediatric Comprehensive Epilepsy Clinics (CECs) offer specialized care for children with DRE.
Purpose of the Study:
- To determine if a paediatric CEC care model is associated with positive outcomes for children with DRE and their families.
- To assess impacts on families' knowledge of diagnosis and treatment.
- To evaluate navigational access to epilepsy services and health behaviors.
Main Methods:
- Prospective cohort study design.
- Families of children with DRE were enrolled in a CEC care model.
- Surveys administered at baseline and 6 months post-enrollment to assess outcomes.
Main Results:
- Statistically significant improvements in families' knowledge of epilepsy type and comorbidities.
- Significant increases in families' utilization of hospital epilepsy resources.
- Enhanced understanding of community and hospital contacts for epilepsy-related questions.
Conclusions:
- The paediatric CEC model positively impacts families' understanding of epilepsy diagnosis and treatment.
- CEC care improves navigational access to essential hospital and community epilepsy services.
- The CEC model is associated with improved health behaviors in families managing childhood DRE.
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.
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