Authors :
Presenting Author: Jessica DeNaples, MPH – Dartmouth Health
Sarah Kaden, BA – Dartmouth Health
Kathryn Giordano, MPH – Dartmouth Health
Meredith Olenec, BA, CHW – Dartmouth Health
Maggie Ellison, BA – Dartmouth Health
Nathania Hartojo, BA – Dartmouth College
Audrey Herrald, BS – Dartmouth Hitchcock Medical Center
Edward Camp, BA – Dartmouth Hitchcock Medical Center
Sana Ali, MD – Dartmouth Hitchcock Medical Center
Lisa Sackett, PhD – Dartmouth Hitchcock Medical Center
Maureen Quigley, RN – Dartmouth Health
Stephanie Jennings, DNP – Dartmouth Health
Joanne Harris, MOT – Dartmouth Health
Ambereen Burhanuddin, MA – Dartmouth Health
Trina Dawson, BA – Dartmouth Health
Laura De Muro, MS, CHW – Dartmouth Health
Doreen Guilette, – Dartmouth Health
Elaine Kiriakopoulos, MD MPH MSc – Dartmouth Health
Rationale:
Epilepsy is a condition highly associated with feelings of stigma. Seizures can impair physical and mental health, cognitive function and social engagement, and the additional impact of stigma — manifesting as isolation, exclusion, perceived inferiority, and internalized shame — may exacerbate limitations on participation in work, education, and relationships. Richer social networks are associated with better cognitive and emotional outcomes. Exploration of how stigma intersects with subjective memory function and quality of life (QOL) in PWE is relatively limited. This pragmatic study examines stigma, cognitive dysfunction and QOL in a real-world national cohort of PWE enrolling in an evidence-based, telehealth-accessible epilepsy self-management (ESM) program, HOBSCOTCH (HOme-Based Self-Management and COgnitive Training CHanges Lives).Methods:
PWE who enrolled in the HOBSCOTCH program between 3/2024-5/2025 (n=448) were evaluated pre-intervention for felt stigma via the Revised Epilepsy Stigma Scale (rESS, 4-point Likert-type scale; Jacoby,1992). Additional voluntary self-report data collected included sociodemographic variables (Table 1), the Everyday Memory Questionnaire-Revised (EMQ-R), Quality of Life in Epilepsy Inventory (QOLIE-10), and the Global Assessment of Severity of Epilepsy (GASE). All data was collected via Research Electronic Data Capture (REDCap). Descriptive statistics, Mann-Whitney U nonparametric tests, Spearman correlations, and chi-square tests of independence were conducted in Excel and SPSS to explore stigma prevalence and associations between stigma, EMQ-R/QOLIE-10 scores, seizure control, and psychosocial variables.Results:
At baseline, felt stigma was high (66.7% of enrollees; mean age 45 SD15; 65% female; 83% white; 85% not Hispanic). Those experiencing stigma were younger on average (p=.006), and had higher GASE (mean=4.29 (stigma) vs 3.27 (no stigma), p< .001), EMQ-R (mean=33.3 (stigma) vs 23.4 (no stigma), p< .001), and QOLIE-10 (mean=3.39 (stigma) vs 2.60 (no stigma), p< .001) scores, indicating that greater cognitive complaints and poorer QOL is associated with felt stigma. There was a significant correlation between cognitive difficulty and QOL across stigma groups (Spearman’s rho=.51, p< .001, Figure 1). Stigma was significantly associated with lower levels of education (p< .001), lack of seizure control (p< .001), inability to work secondary to epilepsy (p< .001) and non-partnered status (p< .001).