Abstracts

Rationale: Childhood epilepsy is a common neurological disorder and caring for children with epilepsy significantly increases parenting stress (Wirrell et al. Parenting stress in mothers of children with intractable epilepsy. Epilepsy Behav 2008; 13(1): 169-73). Furthermore, poor caregiver health literacy is a risk factor for poor outcomes (Paschal et al. Parent health literacy and adherence-related outcomes in children with epilepsy. Epilepsy Behav. 2016 Mar; 56: 73-82). However, parental support is associated with improved quality of life (QOL) in children with epilepsy (Fayed et al. QUALITE Study Group. Children’s perspective of quality of life in epilepsy. Neurology. 2015 May; 84(18): 1830-7). In adult patients, interventions such as self-management training improves QOL (Yadegary et al. The effect of self-management training on health-related quality of life in patients with epilepsy. Epilepsy Behav. 2015 Sep; 50: 108-12). We hypothesize that standardized physician directed training sessions that teach caregivers of children with epilepsy about seizure first aid will improve comfort level and understanding of epilepsy and thus improve QOL of the child and reduce parenting stress. Methods: This is a prospective study that recruited 44 subjects over 6 months from a child neurology resident Medicaid clinic. Subjects were adult caregivers of children with a diagnosis of seizure or epilepsy who were prescribed rectal diazepam as a rescue medication for prolonged seizures. An educational intervention was performed by the primary neurologist that taught the subject basic seizure first aid, how to administer rectal diazepam and reviewed a seizure action plan. The subjects were surveyed immediately before and after the intervention, as well as 1-6 months after the intervention. The survey assessed level of understanding and comfort of the subjects with their child's epilepsy. A Wald chi square test was used for statistical analysis.  Results: Of the 44 patients enrolled in the study, 86% of the caregivers were female, 82% identified as Hispanic, but only 39% preferred the surveys in Spanish. The average age of the subjects was 37, and 29.5% did not have a high school diploma. There was a significant improvement in comfort level in responses to questions about seizure first aid (p = 0.001) and about rectal diazepam administration that was sustained on long-term follow up (p = 0.014). Caregivers with less than a high school diploma had a more significant improvement in comfort level compared to caregivers with a high school diploma or above (p = 0.01). There was no significant change in responses to questions about relationship with providers (p=0.222). Conclusions: This study shows a significant increase in comfort level and understanding of seizure first aid and rectal diazepam indication and administration after a physician directed educational intervention. This emphasizes the importance of patient education for families of children with childhood epilepsy. This study is limited by small sample size and was performed in a Medicaid-only clinic to a population of primarily Hispanic caregivers. In the future, this study can be expanded to include more subjects from different socioeconomic backgrounds and examine the impact of our educational intervention on more objective measures such as emergency room utilization and overall control of seizures. Funding: There was no funding received in support of this abstract.