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Background: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed., Methods: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed., Results: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE., Conclusion: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings., (© 2022 Kaddumukasa M et al.)

Background: Many people living with epilepsy (PLWE) reside in rural communities, and epilepsy self-management may help address some of the gaps in epilepsy care for these communities. A prior randomized control trial of a remotely delivered, Web-based group format 12-week self-management program (SMART) conducted in Northeast Ohio, a primarily urban and suburban community, demonstrated improved outcomes in negative health events such as depression symptoms and quality of life. However, there is a paucity of research addressing the needs of PLWE in rural settings., Methods: The present study leverages collaboration between investigators from 2 mid-western US states (Ohio and Iowa) to replicate testing of the SMART intervention and prioritize delivery to PLWE in rural and semi-rural communities. In phase 1, investigators will refine the SMART program using input from community stakeholders. A Community Advisory Board will then be convened to help identify barriers to trial implementation and strategies to overcome barriers. In phase 2, the investigators will conduct a 6-month prospective randomized control trial of the SMART program compared to 6-month waitlist controls, with the primary outcome being changes in negative health events defined as seizure, self-harm attempt, emergency department visit, or hospitalization. Additional outcomes of interest include quality of life and physical and mental health functioning. The study will also assess process measures of program adopters and system end-users to inform future outreach, education, and self-management strategies for PLWE., Discussion: The method of this study employs lived experience of PLWE and those who provide care for PLWE in rural and underserved populations to refine a remotely delivered Web-based self-management program, to improve recruitment and retention, and to deliver the intervention. Pragmatic outcomes important to PLWE, payers, and policymakers will be assessed. This study will provide valuable insights on implementing future successful self-management programs., Trial Registration: ClinicalTrials.gov NCT04705441 . Registered on January 12, 2021., (© 2021. The Author(s).)

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.)

Background: Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States., Methods: The study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19-30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6-18), range of 1-37 years. The median age of caregivers was 50 years (IQR 45-50.5), with a range of 18-78 years. Seventy five percent of caregivers (6/8) were females., Results: Three major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems., Conclusions: The main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.

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.)