Abstracts

Rationale: Adolescents with epilepsy are an important epidemiologic group, including patients with de novo epilepsy in adolescence and those with pediatric epilepsy who carry diagnosis to adulthood. Adolescence is a period of great change physically, emotionally, and socially and a time where identity forms. All of these issues are complicated by the presence of a chronic neurological disease such as epilepsy, which puts these adolescents at risk for lower quality of life. Stigma has been found to be an important driver of quality of life in this group, however, there has been conflicting data in the literature surrounding the concept, reporting, and understanding of stigma. We sought to better understand the concept of stigma specifically in adolescents with epilepsy. Methods: We administered the Neuro-QOL Stigma, Depression, Anxiety, and Social relations short forms to all adolescents aged 13-21 who were referred to the University of Virginia Adolescent Epilepsy Clinic at initial visit or follow up visits between 5/1/2013-4/31/2014 and able to answer measure questions independently. The Stigma short form measure consists of 8 items using a Likert scale (higher scores associated with increased perception of stigma) and expressed as T scores, with a total possible score of 40. If a patient was seen multiple times during the year interval, only the first record was used in data analysis. Results: 40 patients (17-male, 23-female) with Neuro-QoL Stigma short forms were identified, with average age of 17. The mean total score was 10 (Tscore 44.6), ranging from 8-21, which is comparable to a mean Tscore of 45.16 in validation studies in pediatric epilepsy population with an average age of 13 and 49.29 in pediatric muscular dystrophy population. Gender, epilepsy syndrome, age, age of seizure onset, and presence of developmental delay, were not found to be predictors of stigma. There was a trend toward higher reported stigma associated with seizure severity (mild, moderate, severe), with total scores of 8.8, 9.3, and 12.4, respectively. Future analysis includes correlation of depression, anxiety, and social relations short form results with degree of stigma reporting. Conclusions: Stigma appears to be uncommonly reported by adolescents with epilepsy, however, past literature suggests stigma is present in this age demographic and an important driver of quality of life. Further research is required to better understand the concept and drivers of stigma in this age group.