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Seizure action plans in the pediatric population with epilepsy: Uptake, determinants, and parental interest in a
Michelle Chiu1, Sharon Peinhof1, Conrado De Guzman1
1University of British Columbia and British Columbia Children's Hospital, Division of Neurology, Department of Pediatrics, Vancouver, BC, Canada.
Insights
Most pediatric epilepsy patients lack seizure action plans (SAPs), increasing risks during status epilepticus (SE). Parents show high interest in a SAP mobile app, highlighting a need for better SAP uptake and digital tool integration for pediatric epilepsy management.
Area of Science:
- Pediatric Neurology
- Epilepsy Management
- Digital Health
Background:
- Status epilepticus (SE) is a critical pediatric neurological emergency.
- Timely treatment and appropriate dosing of rescue medications are crucial for minimizing SE-related morbidity and mortality.
- Seizure action plans (SAPs) are vital tools for parents and caregivers to manage SE effectively.
Purpose of the Study:
- To determine the prevalence of Seizure Action Plans (SAPs) in a pediatric epilepsy population.
- To identify factors associated with SAP adoption.
- To assess parental interest in a dedicated SAP mobile application for epilepsy management.
Main Methods:
- A survey was administered to parents of pediatric epilepsy patients at British Columbia Children's Hospital.
- Chart review and univariate/multivariate analyses were conducted to identify predictors of SAP possession.
- A systematic search for available epilepsy management mobile applications was performed.
Main Results:
- 62% of the 192 surveyed participants reported having a SAP.
- Prior SE history and male gender were associated with a higher likelihood of having a SAP.
- 83% of parents expressed interest in a SAP mobile application, yet only 15% currently use epilepsy management apps.
Conclusions:
- There is a significant need to improve SAP adoption rates in pediatric epilepsy, especially for high-risk individuals.
- A SAP mobile application is perceived as valuable by most parents for managing their child's epilepsy.
- A notable gap exists between parental interest in epilepsy management apps and their actual utilization.
Background:
Status epilepticus (SE) is a common pediatric neurological emergency that requires timely treatment to minimize morbidity and mortality, yet administration of rescue medications is often delayed and underdosed. Seizure action plans (SAPs) outline the steps that should be taken by parents and caregivers in case of SE in order to optimize patient outcomes. Our study determined the uptake of SAPs in a pediatric population with epilepsy and assessed parental interest in a SAP mobile application.
Methods:
A survey was distributed to parents of patients with epilepsy aged 1 month to 19 years at British Columbia Children's Hospital. Following chart review, univariate and multivariate analyses were performed to identify variables that predict whether patients have SAPs. A systematic search of available mobile applications for epilepsy management was conducted.
Results:
Of 192 participants, 62% have SAPs. On univariate analysis, history of prior SE and male gender increased likelihood of SAP. On logistic regression, Nagelkerke R2 was 0.204 and our model correctly predicted 82% of patients with SAPs. 83% of parents were interested in a SAP mobile application. There are currently 40 mobile applications available for epilepsy management, but only 15% of respondents reported using them.
Conclusions:
There is a need to increase the percentage of patients with epilepsy with SAPs, particularly in those at greater risk of SE. Most parents would find a SAP mobile application valuable in their child's epilepsy management. There is a gap between the high parental interest in mobile applications for epilepsy management and their current use of such applications.
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