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Description

According to the World Health Organization, more than 50 million people worldwide are living with epilepsy. Self-management practices in epilepsy may help reduce negative health events like emergency department visits, hospitalizations, and breakthrough seizures.  

People with epilepsy experience negative health events such as frequent seizures and emergency department visits. People with epilepsy in rural areas have additional challenges such as social isolation and limited access to care. This project works to replicate an evidence-based intervention called SMART (Self-Management for People with Epilepsy and a History of Negative Health Events) in rural and underserved communities and to assess participants’ perceptions of the intervention. SMART has been demonstrated to reduce epilepsy-related complications and improve quality of life and physical and mental health functioning.

This project will: (1) Replicate this evidence-based intervention in an alternative setting (rural and under-served communities), (2) Incorporate best practices and recommended strategies for enhancing study recruitment and retention, and (3) Assess program adopter’s perceptions of the intervention to inform implementation and dissemination. SMART has been shown to reduce epilepsy-related complications and improve quality of life and physical and mental health functioning. It is an online, 12-week behavioral program delivered by peer educators (patients with epilepsy) and nurse educators. It was developed by researchers at Case Western Reserve University. Examining the effectiveness and acceptability of SMART in rural and underserved communities will help guide its implementation and dissemination.

A recent published analysis for this project focused on an examination of the important issue of stigma in epilepsy. Stigma is a pervasive barrier for people living with epilepsy (PLWE) and can have substantial negative effects. This study evaluated clinical correlates of perceived stigma in a research sample of PLWE considered to be at high risk due to frequent seizures or other negative health events. Standardized measures (n=160) assessed socio-demographics, perceived epilepsy stigma, epilepsy-related self-efficacy, epilepsy self-management competency, health literacy, depressive symptom severity, functional status, social support, and epilepsy-related quality of life. Perceived epilepsy stigma was positively correlated with depression severity and negatively correlated with social support and self-efficacy. Providers caring for PLWE may help reduce epilepsy stigma by screening for and treating depression, encouraging supportive social relationships, and providing epilepsy self-management support. Awareness of epilepsy stigma and associated factors may help reduce some of the hidden burden borne by PLWE.

Resources, Media, & Publications 

Publications:

• Duke SM, González Otárula KA, Canales T, Lu E, Stout A, Ghearing GR, Sajatovic M. A systematic literature review of health disparities among rural people with epilepsy (RPWE) in the United States and Canada. Epilepsy Behav. 2021 Sep;122:108181. doi: 10.1016/j.yebeh.2021.108181. Epub 2021 Jul 9. PMID: 34252832; PMCID: PMC8429139.
• Ghearing GR, Briggs F, Cassidy K, Privitera M, Blixen C, Sajatovic M. A randomized controlled trial of self-management for people with epilepsy and a history of negative health events (SMART) targeting rural and underserved people with epilepsy: a methodologic report. Trials. 2021 Nov 20;22(1):821. doi: 10.1186/s13063-021-05762-z. PMID: 34801061; PMCID: PMC8605559.

• Sajatovic M, Beem Jelley P, Schrag K, Varanese P, Needham K, Black J, Adeniyi C, Barigye R, Yala J, Ghearing GR, Glasgow RE, Briggs F. A case study in science-to-service application of epilepsy self-management. Epilepsy Behav. 2024 Oct;159:109945. doi: 10.1016/j.yebeh.2024.109945. Epub 2024 Aug 8. PMID: 39121751.

• Koroukian SM, Fein HL, Vu L, Bensken WP, Schiltz NK, Sajatovic M, Ghearing GR, Warner DF. Excess prevalence of preexisting chronic conditions in older adults with incident epilepsy. Epilepsia. 2024 Aug;65(8):2354-2367. doi: 10.1111/epi.18032. Epub 2024 Jun 4. PMID: 38837227; PMCID: PMC11465140.

• Warner DF, Fein HL, Schiltz NK, Vu L, Szaflarski M, Bensken WP, Sajatovic M, Ghearing G, Koroukian S. Incident Epilepsy Among US Medicare Beneficiaries, 2019: Differences by Age, Sex, and Race/Ethnicity. Neurology. 2024 Oct 8;103(7):e209804. doi: 10.1212/WNL.0000000000209804. Epub 2024 Sep 9. PMID: 39250748; PMCID: PMC11385955.

• Sajatovic M, Ghearing GR, Tyrrell M, Black J, Krehel-Montgomery J, McDermott G, Yala J, Barigye R, Adeniyi C, Briggs F. Clinical correlates of perceived stigma among people living with epilepsy enrolled in a self-management clinical trial. Epilepsy Behav. 2024 Sep 16;160:110025. doi: 10.1016/j.yebeh.2024.110025. Epub ahead of print. PMID: 39288652.