Abstracts

Rationale: Living Well with Epilepsy II called for further attention to stigma’s impact on people with epilepsy (PWE) in the academia & employment. Stigma may affect PWE both internally through perceptions, & externally through experiences in social, academic, & work situations. We look at stigma & its influence on self-management in PWE.Methods: PWE in SC were recruited from clinical settings, Medicaid & the community. PWE completed a telephone interview, which included questions about stigma, experiences in school and workplace, seizure worry, & self-efficacy (QOLIE & Epilepsy Self-Efficacy Scale). The adult self-efficacy questions had response choices ranging from ‘1=complete confidence’ to ‘5=no confidence at all’. Descriptive analyses have been done on 22 youth, ages 11 to 17, and 187 adults, ages 18 to 83 years.Results: 16% of adults were ‘very worried’ & 24% were ‘somewhat worried’ about being embarrassed or having other social problems that could be caused from having a seizure during the next month. 46% felt epilepsy had at some point kept them from getting the kind of job they would like to have, & 19% reported having lost a job because of epilepsy. Of 8 statements regarding stigma, 82% endorsed at least one with ‘strongly agree’ or ‘agree’. Most commonly endorsed was ‘In many people’s minds, epilepsy attaches a stigma or label to me’, with 60% agreeing. Adults who most strongly disagreed with the latter scored slightly higher on self-efficacy (mean=1.5) than those who strongly agreed (mean=2.2). 41% of youth had worried in the past month ‘very often’ or ‘often’ about having another seizure. Of 9 statements regarding stigma, 77% of youth endorsed at least with ‘strongly agree’ or ‘agree’. Most commonly endorsed were ‘My epilepsy makes me feel like my feelings go up & down, like a rollercoaster’, & ‘I think I’m different because I have epilepsy’, with 50% and 41%, respectively endorsing those statements with ‘agree’. Conclusions: Youth & adults were similar in reporting seizure worry & stigma. Approximately 40% of both youth & adults worry about having a seizure, & about 80% agreed with at least 1 question associating stigma with epilepsy. While the stigma statements were different for youth & adults, both highly endorsed that epilepsy made them feel different or labeled. In addition, adults reported epilepsy as often interfering with job success. These perceptions & experiences in adults appear to be associated with decreased epilepsy self-efficacy. Sources of internal stigma could be decreased with psychoeducational intervention targeting perceived control, self-esteem & behavior management. If done at initial diagnosis this may also decrease comorbidities like anxiety & depression. External sources of stigma could be decreased with public education about epilepsy. There have been many campaigns about other chronic illnesses with non-contingent exacerbations. Similar effort is needed to decrease stigma & increase best outcomes for PWE. These actions support the priority recommendations of Living Well with Epilepsy II. (Sources of funding: Centers for Disease Control & Prevention/American Association of Medical Colleges)