Abstracts

Rationale: A diagnosis of seizures and epilepsy usually results in a lot of stress and anxiety. Currently, there is a lack of easily accessible epilepsy education programs for families at the time of the first seizure and later during their epilepsy journey. Studies have shown the knowledge about seizures and epilepsy will reduce anxiety and increase compliance of affected families. The COVID pandemic has shown us that virtual learning tools allow and facilitate learning. We decided to create a virtual training platform based on white board videos and easy relatable neuron characters. Here we describe how we assessed education needs and selected characters for this program in interaction with family representatives (Figure 1).

Methods: We first asked the families from the outpatient clinic to answer a questionnaire about their beliefs in epilepsy (Gajjar et al., 2000) and the topics about epilepsy that they would like to learn about. We focused on analyzing how families’ beliefs about epilepsy influenced training needs and whether that is correlated with epilepsy severity, time of diagnosis, spiritual beliefs, and cultural background. Simultaneously, we designed different characters to use in our videos. Final characters were selected by families, and healthcare workers. We now started designing the first videos using the selected characters about the most important topics as identified by families.

Results: Seventy-three families answered our survey. Families with non-Caucasian background had a significantly higher interest in learning about basic topics of epilepsy. No difference was found for learning topics covering diagnostics, treatment, and life with epilepsy between different ethnic groups (Figure 2A). Also, religious beliefs and severity of diagnosis had no significant influence on the selected learning material. _x000D_ The superhero neurons, called Zippy and Zappy, were the selected characters out of 9 originally presented character pairs (Figure 2B).

Conclusions: We found that most of the presented topics were of interest for families regardless of the cultural background, and experience with epilepsy.  Therefore, we believe that our platform can have a wide reach as learning content was not linked to ethnicity in our survey. The use of white board video allows a relatively easy translation into different languages. We are currently building our platform and we are in the process of recruiting families who would like to participate in a study where we will determine if our platform is effective on reducing anxiety levels in families with a new epilepsy diagnosis.

Funding: UCB Pharma – Canada, Alberta Children’s Hospital Foundation