Abstracts

Rationale: The Seizures and Outcomes Study in Children (SOS-KIDS) examined the frequency of various statements describing emotional feelings and actions among unaffected siblings to understand how epilepsy and seizures may impact their psycho-social behavior toward their sibling with epilepsy. Methods: SOS-KIDS is a cohort study of pediatric epilepsy patients and their caregivers living in DC and evaluated at Children's National Health System. Patients are recruited during a routine clinic appointment. As part of data collection, caregivers complete a survey about the child's epilepsy and outcomes including the impact of the condition on the family. Among a list of 14 statements, caregivers identified which ones were true for the sibling closest in age and included witnessing and worrying about seizures, pain or suffering with seizures, stigma, feeling proud or protective of the child with epilepsy (CWE), academic performance compared to others of same age, friendships, and feelings of sadness and anger. Demographics of the unaffected sibling were not collected. Fisher's exact test compared the distribution of variables of interest in the sibling groups stratified by whether they had witnessed seizures and worried about seizures. Results: There were 69 CWE, 49% female and 51% male, who also had an unaffected sibling at least 4 years of age. Mean age of CWE was 9.1 years at enrollment, 4.8 years at time of first seizure and 8.2 years at time of most recent seizure. Additional characteristics about the CWE included 78.8% with motor seizures (GTC, myoclonic, tonic, or drop), 79.4% with at least one seizure in past 6 months, 44.9% with developmental delay, 47.8% with cognitive disability, and 24.6% with ADHD. Of the siblings, 42 (60.9%) had witnessed a seizure and this was significantly associated (p < .05) with whether they worried about seizures, thought the CWE suffered or felt pain from a seizure, were proud of and were protective of their sibling, and whether their academic performance was negatively affected by having a sibling with epilepsy. Siblings that worried about seizures (n=34, 49.4%) were significantly more likely to feel sad, think the CWE feels pain during a seizure, have academic performance impacted by epilepsy, and be protective of their sibling. Sibling worry was also associated with whether the CWE was having frequent seizures (p=.02). Feelings of anger (10.1%) or embarrassment (2.8%), wanting to keep epilepsy a secret (7.2%) or complaining about lack of attention (13.0%) were not common among the siblings. Conclusions: Epilepsy impacts siblings in both positive and negative ways. Witnessing seizures engenders understandable anxiety, but unexpected protectiveness and pride in unaffected siblings. Siblings may benefit from education about seizures to reduce negative feelings and impact on school performance. Epilepsy does not appear to be associated with jealousy, embarrassment or stigmatization among unaffected siblings. Funding: This study was supported by the Centers for Disease Control and Prevention.