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Background: Epilepsy is a common neurological condition characterized by poor quality of life and associated stigma. Studies in long-term health conditions suggest that self-management interventions improve the quality of life (QoL) and reduce the perceived stigma among people with epilepsy (PWE). Yet, the utilization of these interventions remains low in sub-Saharan Africa., Objectives: We investigated the feasibility, acceptability, and preliminary efficacy of an adopted novel self-management intervention, Self-management for people with epilepsy and a history of negative health events (SMART) among PWE in Uganda., Design: A two-year, uncontrolled, prospective pilot study in Ugandans with epilepsy was conducted., Participants: Adults aged ≥ 18 years with epilepsy attending a neurology outpatient clinic were enrolled., Intervention: Using a nurse led and peer educator interactions; nine self-management approach sessions (1 individual session and 8 group sessions) were conducted., Main Outcome Measures: The primary outcome was QoL, perceived stigma and depression in PWE at 24-month follow-up using the Quality Of Life In Epilepsy 31 (QOLIE-31) scale and perceived stigma using the Kilifi stigma score and Neurological disorders depression index for epilepsy (NDDI-E)., Results: There were 17 individuals and their caregivers who were enrolled into this study with a mean age of 23.47 (SD = 5.3) years. The study intervention was feasible and acceptable within our settings. Overall, quality of life, stigma level, depression, and seizure frequency in the past 30 days were significantly improved from the baseline scores before the intervention with p-values of <0.0001, <0.0001, 0.004, and <0.0001, respectively., Significance: The SMART intervention engages individuals to actively participate in self-management, and can help reduce depressive symptom severity in PWE. Given the high morbidity and mortality associated with epilepsy, additional research is needed to better identify how SMART might be implemented in routine care settings., (Copyright © 2021 Elsevier Inc. All rights reserved.)

A growing body of research supports self-management approaches that can improve outcomes in people living with epilepsy (PLWE). An evidence-based remotely delivered self-management program (SMART) that was successfully delivered in an urban/suburban setting has the potential to be particularly helpful to PLWE who live in rural communities, where heavy stigma burden and limited access to healthcare is common. In this Phase 1 exploratory study, focus groups of key rural stakeholders (PLWE, family members, care providers) were used to: (1) gather information on factors that may impede or facilitate participation in SMART and (2) elicit overall perceptions of the program, as well as suggestions and feedback for refining it for implementation in Phase 2 of the randomized controlled study (RCT). Qualitative data analysis revealed that focus group participants identified geographic and social isolation, and the more limited access to epilepsy care, as the major barriers to epilepsy self-management for rural populations. However, they felt strongly that SMART could fill an epilepsy care gap in rural communities, and provided suggestions for recruitment and retention strategies of subjects, as well as improvement/modifications to the program curriculum for the Phase 2 RCT., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Significance: Health literacy, the ability to understand necessary health information to make proper health decisions, has been linked to greater frequency of hospitalizations. However, there is limited literature on the associations between health literacy and outcomes in patients with epilepsy, and thus, this secondary analysis investigates the associations between health literacy and outcomes in patients with epilepsy enrolled in the self-management intervention "Self-management for people with epilepsy and a history of negative events" (SMART). We examined the associations between higher health literacy and higher education level and outcomes of the SMART trial., Methods: This is a secondary analysis of data from the SMART self-management intervention, where individuals were randomized to the SMART intervention or a 6-month waitlist (WL) control. Health literacy was assessed at baseline before randomization using the Rapid Estimate of Adult Literacy in Medicine (REALM-R). Education level was self-reported by participants at baseline. Pearson correlations between REALM-R scores and continuous demographic and clinical variables were conducted. Point-biserial Pearson correlations were computed for REALM-R and dichotomous variables. The effect of education on change in negative health events (NHEs) counts from baseline to six months was conducted using a linear regression. A logistic regression with health literacy and randomization arm as predictors and improvement in NHE (1 = improvement, 0 = no change or increased NHEs at 6 months) as the outcome was conducted., Results: Lower education and lower income were significantly correlated with lower health literacy (p < 0.001 and p = 0.03). Higher education level was associated with a greater improvement in 6-month seizure counts (r s (105) = 0.29, p = 0.002), and a greater improvement in total 6-month NHEs (r s (95) = 0.20, p = 0.045). Health literacy was not associated with change in NHEs or with study retention., Conclusions: The SMART intervention appears effective for individuals regardless of health literacy competency. Nevertheless, individuals with higher levels of education have fewer epilepsy complications, and thus, those with limited education may still require additional support while participating in epilepsy self-management programs., Competing Interests: Declaration of competing interest The author has no conflict of interest., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Rationale: There is a paucity of information about the association of seizure severity and quality of life (QoL) in people living with epilepsy (PLWE) in sub-Saharan Africa. We evaluated the relationship between seizure severity and health-related quality of life (HRQoL) of patients with epilepsy being followed up in an outpatient neurology clinic in urban central Uganda., Methods: Forty-eight PLWE who met the study inclusion criteria were enrolled. The study questionnaire was comprised of the Chalfont Seizure Severity Scale (CSSS) and the Quality of Life Inventory in Epilepsy (QOLIE-31). Spearman's rank correlation coefficient was used to determine the association between seizure severity and QoL score., Results: The median age of the study participants was 25 years, with median age (interquartile range (IQR)) of epilepsy onset of 12 (6-18) years. Over 57.4% of the study participants were unemployed. The mean (standard deviation (SD)) of QOLIE-31 and Seizure Severity Score was 62.5 (14.5) and 62.4 (1.6), respectively. There was no gender difference in the seizure severity scores (p = 0.451). An inverse relationship existed between seizure severity and the total QOLIE-31 score (Spearman's rank correlation coefficient, r = -0.48, p = 0.001), and seizure worry (r = -0.31, p = 0.030)., Conclusions: In this Ugandan sample, seizure severity is unacceptably high and directly impacts the life of PLWE. Interventions that reduce seizure severity are urgently needed in our settings to reduce seizures and improve the QoL in PLWE., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: This systematic review identified papers that described epilepsy misconceptions or stigma in sub-Saharan Africa (SSA) and research interventions focused on reducing these misconceptions., Materials and Methods: Publications in the English language from January 2000 to October 2017 that described original research conducted in SSA on misconceptions about epilepsy were utilized., Results: Twenty-three publications were identified. Studies were from Nigeria (N = 4), Cameroon (N = 4), Uganda (N = 3), Zambia (N = 2), Ethiopia (N = 2), Tanzania (N = 2), Kenya (N = 2), Ghana, Zimbabwe, Benin, and Mali (N = 1 each). The studies included assessments of misconceptions among healthcare providers and medical students (N = 3), high school students (N = 2), teachers (N = 2), the general public (N = 10), people with epilepsy (N = 7), and traditional healers (N = 1). Only two studies had stigma-focused interventions. Majority of the studies reported limitations to socialization with people with epilepsy and various beliefs associated with epilepsy., Conclusions: Epilepsy misconceptions, stigmatizing cultural beliefs, and perceptions were widely prevalent in SSA, and there are a few studies targeting epilepsy stigma. Existing stigma-reduction educational approaches may be impractical for general population implementation. Scalable approaches to reduce stigma are urgently needed within SSA., (Copyright © 2018 Elsevier Inc. All rights reserved.)