Abstracts

Rationale: We examined caregiver’s knowledge regarding risks and needs associated with childhood-onset epilepsy including co-morbidities, death, reproductive health, and transition to adult care. Methods: Caregivers of patients with childhood-onset epilepsy filled out a survey at the time of their child’s routine clinic appointment at pediatric neurology clinics associated with the Children’s National Medical Center (CNMC) or at the University of Virginia (UVA). The 26-question survey asked families what they know about epilepsy-related risks and the sources of that information. Demographics and epilepsy characteristics were collected to determine if knowledge varied by household income, education, or gender. Descriptive analyses were conducted. Results: 158 surveys (104 at CNMC and 54 at UVA) were collected; Learning and attention issues: 73% of caregivers were aware of learning and attention problems. The majority (87%) had learned of these issues from the child’s neurologist while 13% learned from other sources including the internet, other health providers or friends/relatives. Death: 69% were aware of an increased risk of death associated with epilepsy, 72% learned about this from the neurologist and 28% first learned about risk of death with epilepsy from other sources, mainly the internet or other health providers. Only 30% of the respondents were familiar with the term SUDEP, but of those, the majority (75%) had learned about SUDEP from their child’s neurologist and 25% learned from internet sources, other parents, or other health providers. The degree to which a caregiver worried about their child dying from epilepsy increased for those that had a better understanding of SUDEP. Reproductive health: 35% of the caregivers reported that they were aware of reproductive health issues that are associated with childhood-onset epilepsy and the majority (71%) learned about reproductive health from their child’s neurologist while 29% learned from other sources including health providers, internet sources, or drug inserts. Transition of care: 32% were aware of the need for eventual transition of care to an adult epilepsy provider and the 76% learned about this from their child’s neurologist. Of the 24% that did not learn about transition from their neurologist, the majority said they learned from internet sources, followed by other health providers or other parents. Parental worry, knowledge, and neurologist conversation was unrelated to demographics and epilepsy characteristics. Conclusions: Discussing epilepsy-related comorbidities and risks is an important aspect of providing clinical care. While a majority of respondents knew about risks from their neurologist, we also identified caregiver knowledge gaps as many of these risks should be discussed with and understood by all patients. Future educational efforts should also explore if increased knowledge also increases parental anxiety which may inadvertently negatively affect parent-child interactions. Funding: This study was supported by the BAND Foundation