Socioeconomic associations of poorly controlled epilepsy in the Republic of Guinea: cross-sectional study.

OBJECTIVE: To explore the socioeconomic factors associated with epilepsy in the Republic of Guinea. METHODS: People living with epilepsy (PLWE) were prospectively recruited at Ignace Deen Hospital, Conakry, in 2018. An instrument exploring household assets as a measure of wealth was designed and administered. Multivariate logistic regression models with fixed effects were fitted to assess the associations of sociodemographic and microeconomic factors with self-reported frequency of seizures in the prior month and regular intake of antiseizure medications (ASMs). Participants were stratified by age group: children (<13 years), adolescents (13-21) and adults (>21). RESULTS: A total of 285 participants (mean age 19.5 years; 129 females; 106 children, 72 adolescents, 107 adults, median household size 8) had an average of 4.2 seizures in the prior month. 64% were regularly taking ASMs. Direct costs of epilepsy were similar across income strata, averaging 60 USD/month in the lowest and 75 USD/month in the highest wealth quintiles (P = 0.42). The poorest PLWE were more likely to spend their money on traditional treatments (average 35USD/month) than on medical consultations (average 11 USD/month) (P = 0.01), whereas the wealthiest participants were not. Higher seizure frequency was associated with a lower household education level in adolescents and children (P = 0.028; P = 0.026) and with being male (P = 0.009) in children. Adolescents in higher-educated households were more likely to take ASMs (P = 0.004). Boys were more likely to regularly take ASMs than girls (P = 0.047). CONCLUSIONS: Targeted programming for children and adolescents in the households with the lowest education and for girls would help improve epilepsy care in Guinea.

OBJECTIF: Explorer les facteurs socioéconomiques associés à l'épilepsie en République de Guinée. MÉTHODES: Des personnes vivant avec l'épilepsie (PVE) ont été recrutées prospectivement à l'hôpital Ignace Deen, à Conakry, en 2018. Un outil explorant les actifs des ménages en tant que mesure de la richesse a été conçu et administré. Des modèles de régression logistique multivariée avec des effets fixes ont été ajustés pour évaluer les associations de facteurs sociodémographiques et microéconomiques avec la fréquence autodéclarée des crises au cours du mois précédent et la prise régulière de médicaments antiépileptiques (MAE). Les participants ont été stratifiés par groupe d'âge: enfants (<13 ans), adolescents (13-21) et adultes (> 21). RÉSULTATS: 285 participants (âge moyen 19,5 ans; 129 femmes; 106 enfants, 72 adolescents, 107 adultes, taille médiane du ménage 8) ont eu en moyenne 4,2 crises au cours du mois précédent. 64% prenaient régulièrement des MAE. Les coûts directs de l'épilepsie étaient similaires dans toutes les strates de revenus, atteignant en moyenne 60 USD/mois dans les quintiles de richesse les plus bas et 75 USD/mois dans les quintiles de richesse les plus élevés (p = 0,42). Les PVE les plus pauvres étaient plus susceptibles de dépenser leur argent pour des traitements traditionnels (35 USD/mois en moyenne) que pour des consultations médicales (11 USD/mois en moyenne) (p = 0,01), contrairement aux participants les plus riches. Une fréquence de crises plus élevée était associée à un niveau d'éducation du ménage plus faible chez les adolescents et les enfants (p = 0,028; p = 0,026) et au fait d'être de sexe masculin (p = 0,009) chez les enfants. Les adolescents des ménages avec un niveau d'éducation plus élevé étaient plus susceptibles de prendre des MAE (p = 0,004). Les garçons étaient plus susceptibles de prendre régulièrement des MAE que les filles (p = 0,047). CONCLUSIONS: Des programmes ciblés pour les enfants et les adolescents dans les ménages les moins scolarisés et pour les filles aideraient à améliorer les soins de l'épilepsie en Guinée.

Depression, sleep quality, and social isolation among people with epilepsy in Bhutan: A cross-sectional study.

PURPOSE: The aim of this study was to analyze the possible contributions of seizure burden, sleep quality, and social integration to depression among people with epilepsy (PWE) in Bhutan. METHODS: Bhutan is a lower-middle-income country in Southeast Asia with a public healthcare system without neurologists. People with epilepsy were prospectively recruited from psychiatrist-run epilepsy clinics at the National Referral Hospital in the capital city of Thimphu. Adult participants with epilepsy were interviewed for clinical history, sleep quality using the Pittsburgh Sleep Quality Index, social networks using the Berkman-Syme Social Network Index, and depressive symptoms using the Patient Health Questionnaire - 9 (PHQ-9). A multivariable regression model was built to assess the relationship between depression as an outcome and the possible contributors of sleep quality, sex, and seizure in the prior month. RESULTS: Out of 80 participants (39 women, mean age: 29.4 years old, range: 18-56 years, 58 [73%] with a seizure in the previous month), 33% had poor sleep quality, 68% were socially isolated, 30% had a mild depressive symptom burden or more, and 18% reported suicidal ideation at the time of their interview. Women had a higher average PHQ-9 score versus men, which showed a trend towards statistical significance (5.6 versus 3.3 PHQ-9 points, p = 0.07), and on average met criteria for mild depression. Social integration was not significantly associated with sleep quality and had no relationship with depressive burden. There was a small positive correlation between poorer sleep quality and depressive symptoms which showed a trend towards statistical significance (r = 0.21, p = 0.06). In a multivariable regression, poor sleep quality was associated with higher depressive symptom burden, adjusting for participant sex and having a seizure in the previous month (p = 0.01). CONCLUSIONS: Our exploratory study disentangles the multilayered psychosocial burden of disease experienced by PWE in Bhutan, a lower-middle-income country with access to antiseizure medications and psychiatrists but not expert epilepsy services or human resources. Further investigation into the interrelationships among social isolation, poor sleep quality, depression, and seizure burden could identify preventable and remediable constituents of this burden.

Prevalence, severity, and associations of depression in people with epilepsy in Guinea: A single-center study.

BACKGROUND AND OBJECTIVE: Depression has long been recognized as a comorbidity of epilepsy in high-income countries, ranging from 17 to 49% of people with epilepsy (PWE). Of the limited studies from sub-Saharan Africa (SSA), where most people have uncontrolled seizures, an even higher prevalence of depression is reported among PWE at times exceeding 80%. We sought to assess the prevalence and severity of depression and its associated factors among PWE in Guinea, a sub-Saharan West African country where most PWE have poorly controlled seizures. METHODS: People with epilepsy from the community, age 16 years old and above, were consecutively recruited into a convenience cohort at the Ignace Deen Hospital in the capital city, Conakry, in summer 2018 as part of a larger study characterizing PWE in Guinea. Each participant was evaluated by a team of Guinean physicians and a U.S.-based neurologist to confirm the diagnosis of epilepsy. Inperson interviews were performed to measure demographic, clinical, socioeconomic, and related variables. Depression was measured via the Patient Health Questionniare-9 in the language of the participant's preference with a cutoff of 5 or more points being categorized as depressed. Regression analyses were performed to measure the associations between explanatory variables with the outcome of depression. RESULT: Of 140 PWE (age range: 16-66 years old; 64 female; 64% taking an antiseizure medication including 28% carbamazepine, 16% phenobarbital, and 14% valproic acid; duration of epilepsy: 11 years; 71% with one or more seizures in the past month; 17% never treated with an antiseizure medication; 90% with loss of consciousness during seizures; 10% without formal education; 31% with university level education; 62% using tap water; 48% with a serious seizure-related injury), the point prevalence of depression was 66% (95% confidence interval [CI]: 58%-74%): 43% of PWE had mild depression, 19% moderate, 4% moderate to severe, and 0.1% severe. In a multivariate analysis, the occurrence of a seizure in the past month (odds ratio: 3.03, 95% CI: 2.63-3.48, p = 0.01) was associated with depression, while gender, self-perceived stigma score, serious injuries, and the number of antiseizure medications taken were not statistically significantly associated (p > 0.05). Twenty-five percent of all participants endorsed thoughts of self-harm or suicidality. CONCLUSION: Two-thirds of PWE in Guinea had depression in this single-institution convenience cohort. The presence of a seizure in the last month was the factor most associated with depression and is modifiable in many PWE. The high prevalance of depression suggests that screening and addressing depressive symptoms should be incorporated into routine epilepsy care in Guinea.

School status and its associations among children with epilepsy in the Republic of Guinea.

BACKGROUND: In low-income countries (LICs), there are multiple barriers for children with epilepsy (CWE) to attend school. We examined potentially modifiable associations with poor school performance in CWE in the West African Republic of Guinea. METHODS: Children with epilepsy of school age were recruited using public announcements and a clinical register of people with epilepsy at the Ignace Deen Hospital in Conakry in 2018. A team of Guinean and U.S. neurologists and neurologists-in-training interviewed each CWE and parent for his/her epilepsy history, household finances, educational attainment level, and perceived stigma using the Stigma Scale of Epilepsy (SSE). Each child was also tested using the Wechsler Nonverbal Scale of Ability (WNV). Low school performance was defined as either not attending school or being held back a grade level at least once. Potential predictors of low school performance were analyzed. FINDINGS: Of 128 CWE (mean age: 11.6 years, 48.4% female), 11.7% (n = 15) never attended school, 23.3% (n = 30) dropped out, and 64.8% (n = 83) were currently enrolled. Of CWE attending school, 46.9% (n = 39) were held back a grade level. Overall, 54 children were defined as low performers (LPs) (42%). ;Greater than 100 lifetime seizures (odds ratio (OR) = 8.81; 95% confidence interval (CI) = 2.51, 37.4; p = 0.001) and lower total WNV score (OR = 0.954; 95% CI = 0.926, 0.977; p < 0.001) were significantly associated with poor school performance in separate models, when controlling for potential confounders. Given the strong relationship between seizure freedom and school performance, we estimated that 38 additional CWE (33.6%) could become high performers (HPs) if all CWE were adequately treated to achieve the lifetime seizure category of <10 seizures and could be cognitively intact again. Models examining SSE and household wealth quintile were not significantly associated with school performance. CONCLUSIONS: Higher lifetime seizures and lower WNV score were significantly associated with low school performance in CWE in Guinea. In spite of our conservative definition of high school performance (attending without failing) and risk of referral bias at an academic center where patients were allowed to self-refer, we demonstrate that seizure control in this setting could increase the number of CWE who could attend and stay in school.

The Changing Face of Osmotic Demyelination Syndrome: A Retrospective, Observational Cohort Study.

OBJECTIVE: To describe the long-term outcomes of osmotic demyelination syndrome (ODS) in an updated cohort. METHODS: We performed a retrospective medical records review of cases of ODS at the Massachusetts General and Brigham and Women's Hospitals using International Classification of Diseases-9th edition codes and a text-based search for central pontine myelinolysis, extrapontine myelinolysis, and osmotic demyelination syndrome (1999-2018). Cases were individually selected based on patients having neuroimaging and symptoms consistent with ODS and no other potentially explanatory etiology. Modified Rankin scale (mRS) scores were extracted at prehospitalization, hospital discharge, 6 months post discharge, and the most recently available clinical visit. RESULTS: We identified 45 cases of ODS (mean age 48.4 years, range 0.07-75 years; 58% female patients). Common comorbidities included liver disease (27%, n = 12), alcoholism (44%, n = 20), and kidney failure (20%, n = 9). Twenty-nine percent of patients had a rapid correction of hyponatremia. Twenty-nine percent had other electrolyte abnormalities. Only 59% (24/41) of patients with complete electrolyte data had abnormalities that could explain their ODS. At the 6-month follow-up, 16% of the patients were dead and 60% of patients had minimal-to-no disability (mRS 0-2). CONCLUSIONS: ODS has a diverse range of clinical presentations. Not all patients have electrolyte abnormalities. The prognosis is generally favorable, although 1 in 6 patients had died at 6 months, likely because of underlying disease states.

Low-field portable brain MRI in CNS demyelinating disease.

A low-field (80 mT), portable MRI scanner has been developed that may address barriers to MRI for people with multiple sclerosis (MS). As a proof of concept study, we imaged two participants with central nervous system demyelinating disease by both a standard 1.5 Tesla MRI and the portable MRI scanner. These images demonstrate the ability to identify a solitary demyelinating lesion in early stage disease and cortical atrophy and chronic white matter changes in late stage disease. In spite of device limitations, including border distortion and lower image quality, the portable device has important implications for addressing barriers to care in people with MS.

Electronic pill bottles to monitor and promote medication adherence for people with multiple sclerosis: A randomized, virtual clinical trial.

OBJECTIVE: We perform a randomized trial to test the impact of electronic pill bottles with audiovisual reminders on oral disease modifying therapy (DMT) adherence in people with MS (PwMS). METHODS: Adults with multiple sclerosis (MS) taking an oral DMT were randomized 1:1 for 90 days to remote smartphone app- and pill bottle-based (a) adherence monitoring, or (b) adherence monitoring with audiovisual medication reminders. Optimal adherence was defined as the proportion of doses taken ±3 h of the scheduled time. Numbers of missed pills and pills taken early, on time, late, and extra were recorded. A multivariable regression model tested possible associations between optimal adherence and age, MS duration, cognitive functioning, and number of daily prescription pills. RESULTS: 85 participants (66 female; mean age 44.9 years) took dimethyl/diroximel fumarate (n = 49), fingolimod (n = 26), or teriflunomide (n = 10). Optimal adherence was on average higher in the monitoring with reminders arm (71.4%) than the monitoring only arm (61.6%; p = 0.033). In a multivariable model, optimal adherence was less likely in younger participants (p < 0.001) and those taking more daily prescription pills (p < 0.001). In the monitoring only arm, 4.0% of doses were taken early, 61.6% on time, 5.6% late, 4.4% in excess, and 24.4% were missed. In the reminders arm, these proportions were 3.4%, 71.4%, 3.7%, 8.7%, and 12.8%, respectively. CONCLUSION: We map real-world oral DMT adherence patterns using mHealth technology. PwMS who received medication reminders had higher optimal adherence. Nonadherence was more nuanced than simply missing pills. Developing strategies to improve adherence remains important in longitudinal MS care.

Measuring Ambulation, Motor, and Behavioral Outcomes with Post-stroke Fluoxetine in Tanzania: The Phase II MAMBO Trial.

We test the safety of fluoxetine post-ischemic stroke in sub-Saharan Africa. Adults with acute ischemic stroke, seen <14 days since new-onset motor deficits, were enrolled from November 2019 to October 2020 in a single-arm, open-label phase II trial of daily fluoxetine 20 mg for 90 days at Muhimbili National Hospital, Dar es Salaam, Tanzania. The primary outcome was safety with secondary outcomes of medication adherence and tolerability. Thirty-four patients were enrolled (11 were female; mean age 52.2 years, 65% < 60 years old; mean 3.3 days since symptom onset). Participants had hypertension (74%), diabetes (18%), and smoked cigarettes (18%). The median National Institutes of Health Stroke Scale score at enrollment was 10.5. The median Fugl-Meyer Motor Scale score was 28.5 (upper extremity 8, lower extremity 17.5). 32/34 participants (91%) survived to 90 days. There were eight serious and two nonserious adverse events. Deaths occurred due to gastrointestinal illness with low serum sodium (nadir 120 mmol/L) with seizure and gastrointestinal bleed from gastric cancer. The average sodium level at 90 days was 139 mmol/L (range 133-146) and alanine transaminase was 28 U/L (range 10-134). Fluoxetine adherence was 96%. The median modified Rankin Scale score among survivors at 90 days was 2 and Fugl-Meyer Motor Scale score was 66 (upper extremity 40, lower extremity 27). Median 90-day Patient Health Questionnaire-9 and Montgomery-Åsberg scores were 3.5 and 4 (minimal depression). Fluoxetine administration for 90 days poststroke in sub-Saharan Africa was generally safe and well-tolerated, but comorbid illness presentations were fatal in 2/34 cases, even after careful participant selection.

Impact of the COVID-19 pandemic on the health care of >1,000 People living with multiple sclerosis: A cross-sectional study.

BACKGROUND: People with multiple sclerosis (PwMS) experienced changes in health behaviors and access to MS care due to the COVID-19 pandemic. The USA has the highest recognized number of Covid19 infections globally. The extent of the impact of COVID-19 has not been well characterized in large samples of PwMS to date. The MS patient perspective on COVID-19 would complement the physician-reported cases of MS and COVID-19 in the literature. METHODS: A cross-sectional survey of adult PwMS was performed online, using the U.S.-based patient-powered iConquerMS™ platform, in April 2020. RESULTS: There were 1,145 respondents (response rate: 20%). 1,019 had a diagnosis of MS and responded completely (average age: 54.2 years, range: 20-81; 79% female; 64% relapsing remitting, 22% secondary progressive, 12% primary progressive; 88% in the USA). 748 (73%) used a DMT in the last year, primarily higher-efficacy therapies: ocrelizumab (n=238), dimethyl fumarate (n=85), fingolimod (n=80). The most frequent comorbidities were depression (41%), hypertension (26%), and asthma (12%). Women were more worried than men about COVID-19 (p=0.001); non-white-identifying PwMS believed it was a greater danger to their health than white-identifying PwMS (p=0.002). Through the continuum of symptoms to care, 61% of PwMS (n=617) reported symptoms associated with COVID-19, 39% (n=395) knew someone exposed to COVID-19, 4% (n=38) were aware of a personal COVID-19 exposure, 13% (n=128) wanted testing for COVID-19 but could not access it, and 4% (n=43) were tested. Specific to their MS care, 64% (n=650) canceled a medical visit, 22% (n=222) canceled a neurologist visit, 11% (n=112) canceled an MRI, 21% (n=212) canceled a laboratory test, and 10% (n=98) changed their DMT in some way due to COVID19 including 65 delaying at least one dose. 37% (n=382) had a telehealth visit due to COVID-19. 37% of PwMS (n=374) experienced employment changes, most commonly working from home (n=194) and having work hours reduced (n=65) while 32 lost their jobs. Of the 7 cases who tested positive for COVID-19 (<1% of participants) (5 female; age range: 29-64 years), DMTs included dimethyl fumarate (n=2), ocrelizumab (n=1), rituximab (n=1), and a clinical trial drug (n=1). CONCLUSIONS: A majority of people with MS reported interruptions to their MS care along the MS care pathway alongside limited access to COVID-19 testing. Postponements and delays in care were common with 10% of participants reporting a change in their DMT administration. Less than 1% of this self-referred convenience online cohort had a positive test for COVID-19 although more than half reported symptoms that are associated with COVID-19.

MAMBO: Measuring ambulation, motor, and behavioral outcomes with post-stroke fluoxetine in Tanzania: Protocol of a phase II clinical trial.

BACKGROUND: SSA has a high stroke incidence and post-stroke morbidity. An inexpensive pharmacological treatment for stroke recovery would be beneficial to patients in the region. Fluoxetine, currently on the World Health Organization Essential Medicines List, holds promise as a treatment for motor recovery after ischemic stroke, but its effectiveness is controversial and untested in this context in SSA. AIM: To determine if fluoxetine 20 mg by mouth daily, given within 14 days of acute ischemic stroke, and taken for 90 days, is well-tolerated and safe with adequate adherence to justify a future randomized, controlled trial of fluoxetine in the United Republic of Tanzania. METHODS: Open-label, phase II clinical trial enrolling up to 120 patients. Participants will be recruited from the Muhimbili National Hospital in Dar es Salaam, Tanzania, and followed for 90 days. The primary outcomes are: 1) safety, including serum sodium and hepatic enzyme levels; and 2) tolerability, as measured through study case report forms. The secondary outcomes are: 1) change in motor strength, as measured through the Fugl-Meyer Motor Scale; 2) adherence, as measured with electronic pill bottles; and 3) participant depressive symptom burden measured via standard questionnaires. CONCLUSIONS: Expanding the evidence base for fluoxetine for Sub-Saharan African stroke survivors requires testing of its safety, tolerability, and adherence. Compared to prior studies in France and the United Kingdom, the patient characteristics, health infrastructure, and usual care for stroke recovery differ substantially in Tanzania. If fluoxetine reveals favorable endpoints, scale up of its use post-stroke is possible.