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Summary: Objective: This is a systematic review aimed at summarizing the evidence related to instruments that have been developed to measure stigma or attitudes toward epilepsy and on stigma‐reducing interventions. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) standards. A broad literature search (1985–2019) was performed in 13 databases. Articles were included if they described the development and testing of psychometric properties of an epilepsy‐related stigma or attitude scale or stigma‐reducing interventions. Two reviewers independently screened abstracts, reviewed full‐text articles, and extracted data. Basic descriptive statistics are reported. Results: We identified 4234 abstracts, of which 893 were reviewed as full‐text articles. Of these, 38 met inclusion criteria for an instrument development study and 30 as a stigma‐reduction intervention study. Most instruments were initially developed using well‐established methods and were tested in relatively large samples. Most intervention studies involved educational programs for adults with pre‐ and post‐evaluations of attitudes toward people with epilepsy. Intervention studies often failed to use standardized instruments to quantify stigmatizing attitudes, were generally underpowered, and often found no evidence of benefit or the benefit was not sustained. Six intervention studies with stigma as the primary outcome had fewer design flaws and showed benefit. Very few or no instruments were validated for regional languages or culture, and there were very few interventions tested in some regions. Significance: Investigators in regions without instruments should consider translating and further developing existing instruments rather than initiating the development of new instruments. Very few stigma‐reduction intervention studies for epilepsy have been conducted, study methodology in general was poor, and standardized instruments were rarely used to measure outcomes. To accelerate the development of effective epilepsy stigma‐reduction interventions, a paradigm shift from disease‐specific, siloed trials to collaborative, cross‐disciplinary platforms based upon unified theories of stigma transcending individual conditions will be needed. [ABSTRACT FROM AUTHOR]

Objective: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors. Methods: Thirteen databases were searched (1985–2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy. Results: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status. Significance: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy. [ABSTRACT FROM AUTHOR]

Objective: Interactions between enzyme‐inducing anti‐seizure medications (EI‐ASMs) and antiretroviral drugs (ARVs) can lead to decreased ARV levels and may increase the likelihood of viral resistance. We conducted a study to determine if co‐usage of ARVs and EI‐ASMs is associated with ARV‐resistant human immunodeficiency virus (HIV) among people living with HIV in Zambia. Methods: Eligible participants were ≥18 years of age and concurrently taking ASMs and ARVs for at least 1 month of the prior 6‐month period. Data were obtained regarding medication and HIV history. CD4 counts, plasma viral loads (pVLs), and HIV genotype and resistance profile in participants with a pVL >1000 copies/mL were obtained. Pearson's test of independence was used to determine whether treatment with EI‐ASM was associated with pVL >1000/mL copies. Results: Of 50 participants, 41 (82%) were taking carbamazepine (37 on monotherapy), and all had stable regimens in the prior 6 months. Among the 13 ARV regimens used, 68% had a tenofovir/lamivudine backbone. The majority (94%) were on a stable ARV regimen for >6 months. Median CD4 nadir was 205 cells/mm3 (interquartile range [IQR] 88‐389), and 60% of participants had commenced ARV treatment before advanced disease occurred. Mean CD4 count at enrollment was 464 cells/mm3 (SD 226.3). Seven participants (14%) had a CD4 count <200 cells/mm3. Four (8%) had a pVL >1000 copies/mL; all were on carbamazepine. Three participants with elevated pVL had a CD4 count <200 cells/mm3. None had documented adherence concerns by providers; however, two had events concerning for clinical failure. HIV genotype testing showed mutations in three participants. Carbamazepine was not found to correlate with elevated pVL (P =.58). Significance: EI‐ASMs are commonly used in sub‐Saharan Africa. Despite concurrent use of EI‐ASMs and ARVs, the majority of participants showed CD4 counts >200 cells/mm3 and were virally suppressed. Carbamazepine was not associated with an increased risk of virological failure or ARV‐resistant HIV. [ABSTRACT FROM AUTHOR]

The article discusses undue regulatory restriction on antiepileptic drug (AED) phenobarbital. Topics discussed include non-availability of treatment guidelines for AEDs in low- and middle-income countries (LMICs), national and international restrictions, need of AEDs medical and scientific purposes, and introduction of Mental Health Gap Action Programme (mhGAP) by World Health Organization (WHO) for providing training to healthcare providers regarding epileptic disorders.

The incidence and prevalence of active epilepsy are greatest in Africa compared to all other continents, even those with equivalent poor settings. This is a reflection of the high levels of structural and metabolic causes and may reflect an increased risk in parts of the continent. The full burden of epilepsy, which includes the social and medical morbidity of the disorder and where people with epilepsy are heavily stigmatized and frequently untreated, cannot be fully assessed even using the disability adjusted life-years, since the assigned disability weights are not specific to these regions. The burden is further exacerbated by social, geographic, and economic barriers to care and the inability of African health systems to manage people with epilepsy effectively because of lack of trained personnel, limited facilities, and poor access to effective or sustained supplies of antiepileptic drugs, or even therapy at all. The situation is compounded by a probable underestimation of the prevalence and incidence of people with epilepsy related to the major stigma associated with the condition in Africa, and the limited training available to most health care workers who are the primary point of assessing most people with epilepsy. Finding innovative ways to address the huge barriers faced by people with epilepsy in Africa needs to be a major goal for the millennium. A PowerPoint slide summarizing this article is available for download in the Supporting Information section . [ABSTRACT FROM AUTHOR]

Purpose It is unclear why some children with falciparum malaria develop acute seizures and what determines the phenotype of seizures. We sought to determine if polymorphisms of malaria candidate genes are associated with acute seizures. Methods Logistic regression was used to investigate genetic associations with malaria-associated seizures ( MAS) and complex MAS (repetitive, prolonged, or focal seizures) in four Malaria GEN African sites, namely: Blantyre, Malawi; Kilifi, Kenya; Kumasi, Ghana; and Muheza, Tanzania. The analysis was repeated for five inheritance models (dominant, heterozygous, recessive, additive, and general) and adjusted for potential confounders and multiple testing. Key Findings Complex phenotypes of seizures constituted 71% of all admissions with MAS across the sites. MAS were strongly associated with cluster of differentiation-ligand-rs3092945 in females in Kilifi (p = 0.00068) and interleukin ( IL)-17 receptor E-rs708567 in the pooled analysis across the sites (p = 0.00709). Complex MAS were strongly associated with epidermal growth factor module-containing mucin-like hormone receptor ( EMR)1-rs373533 in Kumasi (p = 0.00033), but none in the pooled analysis. Focal MAS were strongly associated with IL-20 receptor A-rs1555498 in Muheza (p = 0.00016), but none in the pooled analysis. Prolonged MAS were strongly associated with complement receptor 1-rs17047660 in Kilifi (p = 0.00121) and glucose-6-phosphate dehydrogenase-rs1050828 in females in the pooled analysis (p = 0.00155). Repetitive MAS were strongly associated with EMR1-rs373533 in Kumasi (p = 0.00003) and cystic fibrosis transmembrane conductance receptor-rs17140229 in the pooled analysis (p = 0.00543). MAS with coma/cerebral malaria were strongly associated with EMR1-rs373533 in Kumasi (p = 0.00019) and IL10-rs3024500 in the pooled analysis across the sites (p = 0.00064). Significance We have identified a number of genetic associations that may explain the risk of seizures in >2,000 cases admitted to hospitals with MAS across four sites in Africa. These associations differed according to phenotype of seizures and site. [ABSTRACT FROM AUTHOR]

Purpose: Epilepsy is one of the most common serious neurologic disorders worldwide. Our objective was to determine which economic, health care, neurology, and epilepsy-specific resources were associated with untreated epilepsy in resource-constrained settings. Methods: A systematic review of the literature identified community-based studies in resource-constrained settings that calculated the epilepsy treatment gap, the proportion with untreated epilepsy, from prevalent active epilepsy cases. Economic, health care, neurology, and epilepsy-specific resources were taken from existing datasets. Poisson regression models with jackknifed standard errors were used to create bivariate and multivariate models comparing the association between treatment status and economic and health resource indicators. Relative risks were reported. Key Findings: Forty-seven studies of 8,285 individuals from 24 countries met inclusion criteria. Bivariate analysis demonstrated that individuals residing in rural locations had significantly higher risks of untreated epilepsy (relative risk [RR] 1.63; 95% confidence interval [CI] 1.26-2.11). Significantly lower risks of untreated epilepsy were observed for higher physician density (RR 0.65, 95% CI 0.55-0.78), presence of a lay (RR 0.74, 95% CI 0.60-0.91) or professional association for epilepsy (RR 0.73, 95% CI 0.59-0.91), or postgraduate neurology training program (RR 0.67, 95% CI 0.55-0.82). In multivariate models, higher physician density maintained significant effects (RR 0.67; 95% CI 0.52-0.88). Significance: Even among resource-limited regions, people with epilepsy in countries with fewer economic, health care, neurology, and epilepsy-specific resources are more likely to have untreated epilepsy. Community-based epilepsy care programs have improved access to treatment, but in order to decrease the epilepsy-treatment gap, poverty and inequalities of health care, neurology, and epilepsy resources must be dealt with at the local, national, and global levels. [ABSTRACT FROM AUTHOR]

Although the technical and human resources for epilepsy care and classification are located largely in high income countries, most people with epilepsy reside in developing regions of the world. Advances over the past two decades in the clinical and basic neurosciences have transformed epilepsy care and largely drive the present need for a revised epilepsy classification. These advances have been mirrored by new knowledge about epilepsy in tropical, resource limited settings. A nonhierarchical, multidimensional approach to classification that includes dimensions that can be ascertained in, and are relevant to, resource-limited settings is needed. Such a classification system could be designed for relevance at tertiary care settings in developed regions as well as primary health care settings in developing regions. Insights from the global use of such a classification approach would also offer opportunities to gain complementary information regarding epilepsy across a broad range of settings and could provide new insights into epilepsy and epileptogenesis. Failure to develop a classification inclusive of the developing world would exclude 80% of the epilepsies globally. [ABSTRACT FROM AUTHOR]

Summary A joint panel of the American Academy of Neurology (AAN) and the International League Against Epilepsy (ILAE) convened to develop guidelines for selection of antiepileptic drugs (AEDs) among people with HIV/AIDS. The literature was systematically reviewed to assess the global burden of relevant comorbid entities, to determine the number of patients who potentially utilize AEDs and antiretroviral agents (ARVs), and to address AED-ARV interactions. Key findings from this literature search included the following: AED-ARV administration may be indicated in up to 55% of people taking ARVs. Patients receiving phenytoin may require a lopinavir/ritonavir dosage increase of approximately 50% to maintain unchanged serum concentrations (Level C). Patients receiving valproic acid may require a zidovudine dosage reduction to maintain unchanged serum zidovudine concentrations (Level C). Coadministration of valproic acid and efavirenz may not require efavirenz dosage adjustment (Level C). Patients receiving ritonavir/atazanavir may require a lamotrigine dosage increase of approximately 50% to maintain unchanged lamotrigine serum concentrations (Level C). Coadministration of raltegravir/atazanavir and lamotrigine may not require lamotrigine dosage adjustment (Level C). Coadministration of raltegravir and midazolam may not require midazolam dosage adjustment (Level C). Patients may be counseled that it is unclear whether dosage adjustment is necessary when other AEDs and ARVs are combined (Level U). It may be important to avoid enzyme-inducing AEDs in people on ARV regimens that include protease inhibitors or nonnucleoside reverse transcriptase inhibitors because pharmacokinetic interactions may result in virologic failure, which has clinical implications for disease progression and development of ARV resistance. If such regimens are required for seizure control, patients may be monitored through pharmacokinetic assessments to ensure efficacy of the ARV regimen (Level C). [ABSTRACT FROM AUTHOR]

Lithium therapy can cause a confusional state by direct toxicity, precipitation of nonconvulsive status epilepticus, or by interplay with other neuroleptic medications to produce neuroleptic malignant syndrome or serotonin syndrome. These conditions resemble each other clinically, but EEG may help differentiate among them. We reviewed the EEG patterns with triphasic waves or rhythmic delta activity in lithium toxic patients and discuss clinical and EEG differentiation among syndromes. Lithium toxicity poses significant diagnostic challenges from EEG and clinical perspectives. [ABSTRACT FROM AUTHOR]

Purpose: Most people with epilepsy (PWE) reside in developing countries with limited access to medical care. In sub-Saharan Africa (SSA), traditional healers (THs) play a prominent role in caring for PWE, yet little is known about epilepsy care by THs. We conducted a multimethod, qualitative study to better understand the epilepsy care delivered by THs in Zambia. Methods: We conducted focus-group discussions with THs, in-depth semistructured interviews with a well-recognized TH at his place of work, and multiple informal interviews with healthcare providers in rural Zambia. Results: THs recognize the same symptoms that a neurologist elicits to characterize seizure onset (e.g., olfactory hallucinations, jacksonian march, automatisms). Although THs acknowledge a familial propensity for some seizures and endorse causes of symptomatic epilepsy, they believe witchcraft plays a central, provocative role in most seizures. Treatment is initiated after the first seizure and usually incorporates certain plant and animal products. Patients who do not experience further seizures are considered cured. Those who do not respond to therapy may be referred to other healers. Signs of concomitant systemic illness are the most common reason for referral to a hospital. As a consequence of this work, our local Epilepsy Care Team has developed a more collaborative relationship with THs in the region. Conclusions: THs obtain detailed event histories, are treatment focused, and may refer patients who have refractory seizures to therapy to other healers. Under some circumstances, they recognize a role for modern health care and refer patients to the hospital. Given their predominance as care providers for PWE, further understanding of their approach to care is important. Collaborative relationships between physicians and THs are needed if we hope to bridge the treatment gap in SSA. [ABSTRACT FROM AUTHOR]

Summary: Purpose: Previous research suggests that seizure freedom may be necessary to improve health-related quality of life (HRQOL) for epilepsy surgery patients, but little is known regarding the seizure-frequency reduction needed to improve HRQOL among medically treated individuals. Methods: With data from 134 adults with refractory complex partial seizures participating in a randomized controlled antiepileptic drug (AED) trial, we compared the change in HRQOL across groups having different levels of change in seizure frequency: 100%, 75–99%, 50–74% reduction, and 0–50% increase or decrease. Changes over time within each seizure-reduction group also were assessed. HRQOL was measured by the QOLIE-31, QOLIE-89, and SF-36. Results: Subjects who became seizure free reported significantly more positive change than those who did not on the QOLIE-31 and QOLIE-89 overall scores, the QOLIE-89 mental health, physical health, and epilepsy-targeted composites, as well as the SF-36 mental health summary score. Changes over time in overall QOLIE-31 and QOLIE-89 scores were significantly more positive for subjects who achieved seizure freedom (i.e., 100% reduction in seizure frequency) than for those who did not. No significant change in QOLIE-31 and QOLIE-89 overall scores was observed for subjects who did not achieve seizure freedom. Conclusions: In this study, HRQOL improvement occurred primarily among patients who achieved complete seizure freedom. Many AED trials use a 50% seizure-frequency reduction criterion as a trial end point, but measurable impacts of this degree of reduction in seizure frequency on HRQOL in this sample were not observed. These results further support striving for seizure freedom as an epilepsy care goal. [ABSTRACT FROM AUTHOR]

The article discusses realistic methods of care delivery for epilepsy in resource-poor regions. It focuses on the greater-than-90% treatment gap in the least developed regions of the world and discusses the necessity of collaborating with traditional healers, clinical officers, and nurses. It discusses the challenges presented by patients' preference for traditional care in Kenyan communities, and describes the necessity for physicians to form alliances with traditional healers.

A letter to the editor is presented in response to an article about the lack of appropriate treatment for people with comorbid HIV/AIDS and epilepsy in sub-Saharan Africa.

Comments on the quality of life of patients with psychogenic non-epileptic seizures. Comparison with the quality of life of those with epileptic seizures; Measures of health-related quality of life.

A letter to the editor is presented in response to the article about the difficulties of distinguishing triphasic waves (TWs) from some cases of nonconvulsive status epilepticus (NCSE) with blunted sharp-slow wave morphologies that was published in the previous issue.

The plight of people with epilepsy (PWE) in developing countries is generally presented in the context of very limited access to care and social stigmatization arising from the disorder. Epilepsy Care Team observed another unfortunate consequence of epilepsy in the developing world, antiepileptic drug (AED) toxicity due to the acute weight loss and metabolic changes experienced by PWE during times of famine. Whether renal or hepatic dysfunction occurring as a result of their poor nutritional state played a role in toxicity remains unknown, because people cannot assess these parameters or drug levels at Chikankata.