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OBJECTIVE: Effective surgical treatment of drug-resistant epilepsy depends on accurate localization of the epileptogenic zone (EZ). High-frequency oscillations (HFOs) are potential biomarkers of the EZ. Previous research has shown that HFOs often occur within submillimeter areas of brain tissue and that the coarse spatial sampling of clinical intracranial electrode arrays may limit the accurate capture of HFO activity. In this study, we sought to characterize microscale HFO activity captured on thin, flexible microelectrocorticographic (µECoG) arrays, which provide high spatial resolution over large cortical surface areas. METHODS: We used novel liquid crystal polymer thin-film µECoG arrays (.76-1.72-mm intercontact spacing) to capture HFOs in eight intraoperative recordings from seven patients with epilepsy. We identified ripple (80-250 Hz) and fast ripple (250-600 Hz) HFOs using a common energy thresholding detection algorithm along with two stages of artifact rejection. We visualized microscale subregions of HFO activity using spatial maps of HFO rate, signal-to-noise ratio, and mean peak frequency. We quantified the spatial extent of HFO events by measuring covariance between detected HFOs and surrounding activity. We also compared HFO detection rates on microcontacts to simulated macrocontacts by spatially averaging data. RESULTS: We found visually delineable subregions of elevated HFO activity within each µECoG recording. Forty-seven percent of HFOs occurred on single 200-µm-diameter recording contacts, with minimal high-frequency activity on surrounding contacts. Other HFO events occurred across multiple contacts simultaneously, with covarying activity most often limited to a .95-mm radius. Through spatial averaging, we estimated that macrocontacts with 2-3-mm diameter would only capture 44% of the HFOs detected in our µECoG recordings. SIGNIFICANCE: These results demonstrate that thin-film microcontact surface arrays with both highresolution and large coverage accurately capture microscale HFO activity and may improve the utility of HFOs to localize the EZ for treatment of drug-resistant epilepsy.
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Ondas Encefálicas , Epilepsia Refractaria , Epilepsia , Humanos , Electroencefalografía/métodos , Epilepsia/cirugía , Epilepsia/diagnóstico , Encéfalo , Epilepsia Refractaria/diagnóstico , Epilepsia Refractaria/cirugíaRESUMEN
INTRODUCTION: Epilepsy is considered one of the most burdensome neurologic diseases by the World Health Organization due to the high risk of morbidity and mortality. Few studies have investigated the epidemiology of idiopathic epilepsy in Sub-Saharan Africa (SSA). This study aims to characterize the disease burden of epilepsy among the older population in SSA via a large international database. METHODS: Descriptive epidemiological data from the Global Burden of Disease (GBD) database was collected for idiopathic epilepsy in all regions of SSA. The "older" population was defined as 55 years of age and above. The variables of interest included mortality, incidence, prevalence, and disability-adjusted life years (DALYs) rates per one hundred thousand populations. RESULTS: The average mortality rate was highest in Western SSA (6.34 per 100,000), and all regions were significantly higher than the global average (p < 0.001). DALYs and incidence rates of idiopathic epilepsy in all regions of SSA were significantly higher than the global averages (p < 0.01). Globally, the older population had a significantly higher mortality rate than the younger population (2.78 vs 1.62, respectively; p < 0.01). The older population had a higher mortality rate than the younger population in each region of SSA (p < 0.01). Conversely, for DALYs, the younger population had a higher disease burden than the older population globally and in each region of SSA (p < 0.01). CONCLUSION: This study is the first to examine the epidemiologic profile of idiopathic epilepsy in the older population in SSA. Our results indicate that, when compared with the global population, older adults in SSA suffer a greater disease burden and mortality. This study reports the immense need for increased resources and awareness regarding epilepsy in the elderly population of Africa.
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OBJECTIVE: There is no standard way in which physicians teach or evaluate surgical residents intraoperatively, and residents are proving to not be fully competent at core surgical procedures upon graduating. The Surgical Autonomy Program (SAP) is a novel educational model that combines a modified version of the Zwisch scale with Vygotsky's social learning theory. The objective of this study was to establish preliminary validity evidence that SAP is a reliable measure of autonomy and a useful tool for tracking competency over time. METHODS: The SAP breaks each surgical case into 4 parts, or zones of proximal development (ZPDs). Residents are evaluated on a 4-tier autonomy scale (TAGS scale) for each ZPD in every surgical case. Attendings were provided with a teaching session about SAP and identified appropriate ZPDs for surgical cases under their area of expertise. All neurosurgery residents at Duke University Hospital from July 2017 to July 2021 participated in this study. Chi-square tests and ordinal logistic regression were used for the analyses. RESULTS: Between 2017 and 2021, there were 4885 cases logged by 27 residents. There were 30 attendings who evaluated residents using SAP. Faculty completed evaluations on 91% of cases. The ZPD of focus directly correlated with year of residency (postgraduate year) (χ2 = 1221.1, df = 15, p < 0.001). The autonomy level increased with year of residency (χ2 = 3553.5, df = 15, p < 0.001). An ordinal regression analysis showed that for every year increase in postgraduate year, the odds of operating at a higher level of independence was 2.16 times greater (95% CI 2.11-2.21, p < 0.001). The odds of residents performing with greater autonomy was lowest for the most complex portion of the case (ZPD3) (OR 0.18, 95% CI 0.17-0.20, p < 0.001). Residents have less autonomy with increased case complexity (χ2 = 160.28, df = 6, p < 0.001). Compared with average cases, residents were more likely to operate with greater autonomy on easy cases (OR 1.44, 95% CI 1.29-1.61, p < 0.001) and less likely to do so on difficult cases (OR 0.72, 95% CI 0.67-0.77, p < 0.001). CONCLUSIONS: This study demonstrates preliminary evidence supporting the construct validity of the SAP. This tool successfully tracks resident autonomy and progress over time. The authors' smartphone application was widely used among surgical faculty and residents, supporting integration into the perioperative workflow. Wide implementation of SAP across multiple surgical centers will aid in the movement toward a competency-based residency education system.
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Internado y Residencia , Neurocirugia , Competencia Clínica , Educación de Postgrado en Medicina , Humanos , Autonomía ProfesionalRESUMEN
This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/epidemiología , Epilepsia/terapia , Humanos , Uganda/epidemiologíaRESUMEN
PURPOSE: We sought to address the construct validity and reliability of the Personal Impact of Epilepsy Scale (PIES), an epilepsy-specific quality-of-life measure, in patients with epilepsy in Uganda. We also sought to assess the applicability of the scale across three languages: English, Luganda, and Runyankole. METHODS: Patients with epilepsy (Nâ¯=â¯626) were recruited at the time of care seeking from Mulago National Referral Hospital (MNRH), Butabika National Referral Mental Hospital (BNRMH), and Mbarara Regional Referral Hospital (MRRH), and were given the English, Runyankole, and Luganda versions of the PIES as a part of a larger interview. Reliability, internal consistency specifically, was assessed using three parameters: Cronbach's alpha, McDonald's Omega, and composite reliability. Construct validity (internal structure) was evaluated with principal component analysis (PCA) for three factors, as well as confirmatory factor analysis (CFA) for a three-factor structure of the scale. We also assessed correlations between the three PIES subscales and the seizure severity question in the Liverpool Seizure Severity Scale (LSSS) and reported seizure frequency. RESULTS: The three-factor model of the PIES had adequate reliability, with Cronbach's Alpha, McDonald's Omega, and composite reliability values over 0.7, except for the Cronbach's Alpha and McDonald's Omega values for the second factor, which was slightly lower than 0.7 in the full sample as well as when stratified by study language. The PCA and CFA models for the scale demonstrated adequate fit with the Tucker-Lewis index (TLI), comparative fit index (CFI), and root mean square error of approximation (RMSEA), with TLI and CFI values above 0.9 and RMSEA values less than 0.08. However, the model demonstrated inadequate fit with the Chi-square indicator, which yielded a significant p-value. Individual factor loadings ranged from 0.50 to 0.95 in the full sample, 0.45 to 0.98 in the English sample, and 0.45 to 0.93 in the Luganda sample. Finally, the three PIES subscales aligned with reported seizure frequency and the seizure severity question from the LSSS. CONCLUSIONS: This study presents the first Luganda and Runyankole versions of the PIES, and the first validation of this scale in English and Luganda with patients with epilepsy in Uganda. The PIES was found to have acceptable psychometric properties for reliability and validity parameters. Thus, the scale is recommended for use and for further investigation in patients with epilepsy in Uganda. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/diagnóstico , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , UgandaRESUMEN
In this summary paper, we review the body of research contained in this special issue, The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda, and corollary recommendations for a way forward. We review key findings and conclusions for the studies, which tell a story of culture and care-seeking through discussions and data gleaned from a rich research landscape traversing community village dwellings, shared communal areas, churches, and urban hospitals. The voices and perspectives of over 16,000 study participants inclusive of people living with epilepsy, their neighbors and healthcare workers, traditional healers, and faith leaders are reported. From this, we synthesize findings and prioritize a set of recommendations to advance epilepsy care in Uganda. Progress will require infrastructure strengthening, multilevel educational investments, and an ambitious, extensive program of community sensitization. These proposed priorities and actions outline a way forward through formidable but surmountable challenges but require harmonized efforts by government and other relevant stakeholders, scholars, clinicians, and community leaders. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/terapia , Humanos , Aceptación de la Atención de Salud , UgandaRESUMEN
OBJECTIVE: Epilepsy is one of the most prevalent, treatable neurological diseases globally. In sub-Saharan Africa, people with epilepsy (PWE) frequently seek treatment from traditional or pastoral healers, who are more accessible than biomedical care providers. This often contributes to the substantial time delay in obtaining adequate biomedical care for these patients. In Uganda, the few biomedical providers who can treat epilepsy cannot meet the great need for epilepsy care. Additionally, patients are often hesitant to seek biomedical care, often preferring the easily accessible and trusted sociocultural treatment options. This study sought to elucidate the barriers to biomedical care for PWE as well as identify potential solutions to overcome these barriers from various stakeholder perspectives. METHODS: This study used qualitative research methods. Semistructured interviews and focus group discussions were conducted with four major stakeholder groups: PWE or family members of PWE, neurologists and psychiatrists, traditional healers, and pastoral healers. All interviews and focus group discussions that were in English were audio recorded and transcribed verbatim. Those that were not in English were translated live and audio recorded. A translator later translated the non-English portion of audio recording to ensure proper interpretation. Two independent coders coded the dataset and conducted an inter-rater reliability (IRR) assessment to ensure reliable coding of the data. Thematic analysis was then performed to discern themes from the data and compare nuances between each of the study design groups. RESULTS: Participants discussed several different causes of epilepsy ranging from spiritual to biological causes, often incorporating elements of both. Commonly endorsed spiritual causes of epilepsy included witchcraft and ancestral spirits. Commonly endorsed biological causes included genetics, fever, malaria, and brain injury. For patients and families, beliefs about the cause of epilepsy often played a role in whom they chose to seek treatment from. Three major barriers to biomedical care were discussed: practical barriers, medical infrastructure barriers, and barriers related to stigma. Practical barriers related to issues such as transportation, cost of medical care, and distance to the nearest healthcare facility. Under medical infrastructure, drug stock-outs and lack of access to antiepileptic drugs (AEDs) were the most consistent problems stated among patients. Stigma was heavily discussed and brought up by nearly every participant. Additionally, three significant solutions to improving epilepsy care in Uganda were highlighted by participants: collaboration among treatment providers, community sensitization efforts to address stigma, and building medical infrastructure. Within building infrastructure, all participant types, except traditional healers, proposed the development of an epilepsy clinic designed to specifically treat epilepsy. CONCLUSIONS: Based on these findings, there are four critical interventions that should be considered for improving epilepsy care in Uganda: the creation of dedicated epilepsy clinics, infrastructure strengthening to address medication stock-outs, community outreach programs for sensitization, and collaboration between biomedical providers and traditional healers. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Epilepsia/terapia , Grupos Focales , Humanos , Investigación Cualitativa , Reproducibilidad de los Resultados , UgandaRESUMEN
OBJECTIVE: Epilepsy is a disease that is stigmatized globally. Several studies have introduced sensitization efforts to reduce stigma towards people with epilepsy (PWE) in various settings. Although sensitization efforts have shown some evidence of improved attitudes towards epilepsy, progress has been limited. This systematized literature review summarizes the existing literature concerning interventions that reduce stigma towards PWE. By conducting an overview of existing interventions, we aimed to consolidate knowledge and outcomes of existing efforts as well as highlight gaps and directions for future interventions. METHODS: We searched MEDLINE (via PubMed) and Embase for English-language studies published between January 1, 1970 and November 15, 2017 that focused on stigma reduction strategies for PWE in any global setting. Studies were included if they described a stigma reduction intervention for epilepsy. Studies were excluded if they were reviews, editorials, conference proceedings, abstracts, or did not discuss a stigma reduction intervention. We thematically grouped studies based on type(s) of intervention(s) addressed and summarized interventions, outcome measures, and results for each study included in the review. RESULTS: Of the 1975 initial citations, 32 studies met our inclusion criteria. Interventions clustered into four broad categories including public awareness interventions, policy-based interventions, school-based interventions, and interventions that targeted PWE themselves as well as their caregivers and peers. Efficacy of these interventions as reported by the authors was mixed. Many studies did not use validated outcome measures to assess stigma. CONCLUSIONS: Although intervention efforts have been made towards epilepsy stigma reduction at many levels, stigma towards and discrimination against PWE prevail worldwide. About 75% of the studies included in this review were conducted in high-income countries (HICs) despite the disproportional need in low- and middle-income countries (LMICs). Furthermore, robust outcome measures to assess efficacy in stigma reduction for interventions are lacking, calling into question the validity of reported outcomes for both positive and null findings. Therefore, more work is needed in both developing effective stigma reduction strategies, especially in LMICs, and validating tools to measure their efficacy. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Estigma Social , Actitud , Epilepsia/terapia , Humanos , Pobreza , UgandaRESUMEN
OBJECTIVE: This study sets out to describe the current demographics of people with epilepsy (PWE) attending hospital-based care in Uganda and the epilepsy treatment practices within three of the largest Ugandan public referral hospitals. METHODS: In a six-month prospective cohort study, 626 children and adults attending epilepsy clinics at Mulago National Referral Hospital, Butabika National Referral Mental Hospital and Mbarara Regional Referral Hospital were enrolled. Using a study questionnaire, data were collected at baseline and at 3â¯weeks, 3â¯months, and 6â¯months following enrollment. Specific data surrounding individual patient demographics, clinical characteristics and severity of epilepsy, and treatment of epilepsy with antiepileptic drugs (AEDs) were collected. RESULTS: Female patients totaled to 50.8%, with a nearly equal gender distribution at each hospital. There was no statistical difference in gender or age between sites. The majority of PWE had completed primary school, with less than 15% of patients completing more than a secondary education. Seizure severity was high, with most patients having multiple seizures per week at the initial onset of epilepsy, and greater than 90% of patients reporting a loss of consciousness with seizures. The majority of patients (54.95%) also reported a developmental or learning delay. Most patients were on 1 AED (46.01%) or 2 AEDs (36.90%), with carbamazepine being the most frequently prescribed AED. There was a trend towards improved seizure severity over the follow-up period, as assessed by the corresponding Personal Impact of Epilepsy Scale (PIES) subscale. CONCLUSIONS: People with epilepsy attending hospital-based care in Uganda tend to have severe forms of epilepsy requiring management with AEDs. Current hospital-based practices show a positive trend for seizure burden and quality of life of PWE in Uganda. Further interventions to improve overall access to biomedical care are required to continue to advance the management of PWE across all communities. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Calidad de Vida , Adulto , Anticonvulsivantes/uso terapéutico , Niño , Epilepsia/tratamiento farmacológico , Epilepsia/epidemiología , Femenino , Hospitales , Humanos , Estudios Prospectivos , Derivación y Consulta , Uganda/epidemiologíaRESUMEN
OBJECTIVE: In Uganda, causal attributions for epilepsy reflect a variety of beliefs and impact care-seeking behavior, perpetuate stigma, and undermine the effectiveness of interventions to narrow the epilepsy treatment gap. The objective of this study was to characterize beliefs about seizure etiology to gain a better understanding of how epilepsy is conceptualized in the community in order to inform culturally appropriate educational policies and interventions. METHODS: In a community-based study, 15,383 participants were surveyed about beliefs related to 15 potential causes for epilepsy. Principal axis factor analysis (PFA) was performed to identify causative factors and then utilized to classify singular versus pluralistic belief systems related to epilepsy etiology. Analysis of variance (ANOVA) and Mann-Whitney U-tests were conducted to examine the differences in background characteristics across the etiology belief groups. RESULTS: Three main causative factors emerged from the PFA: biological, sociospiritual, and biospiritual. Among those endorsing at least one factor (nâ¯=â¯13,036), the biological factor was endorsed most frequently as a potential cause for epilepsy (88.0%), followed by the sociospiritual (63.4%), then biospiritual (47.6%). Review of the patterns of endorsement found that only 22.2% endorsed the biological factor alone, 6.7% the sociospiritual factor alone, and 2.8% the biospiritual factor alone (total 31.7%). The remainder endorsed a combination of two or all three factors as being potentially causal, and most (65.7%) endorsed a pluralistic combination inclusive of a biological etiology. Group comparisons showed that endorsing only the biological factor was associated with the highest levels of education (pâ¯<â¯0.01), the pluralistic group had the highest ratio of people in the household who needed assistance to those that could provide aid (pâ¯<â¯0.01), and there were significant differences in income across specific groups (pâ¯<â¯0.01). CONCLUSIONS: Pluralistic attributions for epilepsy are common in Uganda, with the majority of community members drawing from biomedical and traditional concepts to construct complex explanations for seizures that transcend discrete belief categories traditionally depicted in the literature. These findings emphasize the need to understand cultural beliefs about epilepsy in order to design contextually specific interventions and education programs, which respect the fundamental beliefs and values of the community. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Aceptación de la Atención de Salud , Causalidad , Epilepsia/epidemiología , Epilepsia/etiología , Humanos , Estigma Social , Uganda/epidemiologíaRESUMEN
OBJECTIVE: The objective of the study was to characterize and compare the attitudes, beliefs, and perceptions about epilepsy across community and patient cohorts in Uganda. METHODS: This was a descriptive study utilizing two samples: a randomly selected, national survey community sample and a hospital-based patient sample of people with epilepsy (PWE) and their caregivers attending clinic settings in Kampala and Mbarara, Uganda for epilepsy care. Both samples were surveyed about their beliefs about epilepsy, its treatment, and people who have the illness. Multivariate linear regression was used to examine group differences and variables associated with specific beliefs. RESULTS: Among the 15,818 community survey participants who participated in this study, 435 study participants reported symptoms suggestive of recurrent seizures, and all 626 subjects in the hospital-based sample had confirmed epilepsy. Results revealed significant differences across groups in their endorsement of epilepsy as a contagion; 37% of people in the community unaffected by epilepsy, and 39% of people with suspected epilepsy who did not seek care believed that epilepsy was contagious by touch, in contrast to 8% of PWE or their caregivers attending regular hospital-based care. Higher educational attainment and income, and seeking regular hospital-based medical care were associated with less endorsement of epilepsy as a contagion, while age, education, income, area of residence, and presence of seizure symptoms, were significant predictors of support or belief in the basic rights of PWE. Study participants within the community who screened negative for seizures placed the most restrictions on rights for PWE. To varying degrees, the samples all endorsed the effectiveness of allopathic, traditional, and religious providers, and the use of pharmaceutical drugs, traditional rituals and herbs, and prayer. CONCLUSIONS: People with epilepsy who are attending biomedical care for routine epilepsy care think differently about epilepsy, its treatment, and the rights of those with the disease than the general population. Within the community setting, more erroneous beliefs and negative attitudes about epilepsy and PWE persist, and they not only contribute to stigma but also interfere with the patients' health-seeking behavior. Further confounding the care of PWE, the pluralistic healthcare system in Uganda is evident in endorsements spanning biomedical, traditional, and religious treatment methods. Focused awareness campaigns utilizing local epilepsy societies are needed to promote epilepsy health literacy, to favorably impact acceptance and opportunities for PWE in Uganda, and to facilitate efficient uptake of biomedical care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Conocimientos, Actitudes y Práctica en Salud , Epilepsia/epidemiología , Epilepsia/terapia , Humanos , Estigma Social , Encuestas y Cuestionarios , Uganda/epidemiologíaRESUMEN
OBJECTIVE: Epilepsy is the most common chronic neurological disorder in the world and imposes a large economic burden on global healthcare systems, especially in low-income settings and rural areas as is found in sub-Saharan Africa (SSA). Despite the high epilepsy prevalence, there are no systematic descriptions of healthcare provider (HCP) perceptions and needs in managing people with epilepsy (PWE) in Uganda. Identifying these perceptions and needs is crucial for understanding community priorities, thereby enhancing the development of culturally sensitive communications, interventions, and research approaches. METHODS: In this qualitative study, we used semistructured interview guides to conduct focus group discussions that explored the perspectives of 32 providers of epilepsy care from health facilities around Mbarara, Uganda. Our sample included nonspecialized general physicians (nâ¯=â¯3), medical residents (nâ¯=â¯8), medical clinical officers (nâ¯=â¯3), psychiatric clinical nurses (nâ¯=â¯6), medical nurses and nursing assistants (nâ¯=â¯9), and other providers (nâ¯=â¯3), who were loosely grouped into discussion groups based on level or type of training. Self-assessed proficiency ratings were also administered to gain a better understanding of participants' confidence in their training, preparedness, and capabilities regarding epilepsy care. Thematic analysis of the focus group transcripts was conducted to ascertain commonly occurring themes about perceptions and challenges in epilepsy care. RESULTS: Our analyses identified nine major themes that dominated the perspectives of the study participants: care management, medications, diagnostics, HCP training, human resources, location, patient education, social support, and community knowledge and beliefs. Proficiency ratings prioritized areas of confidence as knowledge related to referrals, psychosocial impacts, and seizure neurophysiology. Areas of need were revealed as knowledge of diagnostic tools and antiepileptic drug (AED) regimens. CONCLUSIONS: Our findings delineate the perspectives of providers caring for PWE, with consistent recognition of challenges centering around resource augmentation, infrastructure strengthening, and education. Participants emphasized the urgent need to augment these resources to address limitations in medication types and access, trained human resources, and diagnostic tools. They overwhelmingly recognized the need for infrastructure strengthening to address human, diagnostic, medicinal, and capital resource limitations that place undue burden on patients with epilepsy and physicians. Providers indicated a clear desire to learn more about different diagnostic tools and medical management practices, potentially through continuing education, specialized training, or more intentional in-school diagnostic preparation. They also advocated for the powerful influence of patient and family education and clearly articulated the need for community sensitization and support. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Personal de Salud , Epilepsia/epidemiología , Epilepsia/terapia , Grupos Focales , Humanos , Investigación Cualitativa , Uganda/epidemiologíaRESUMEN
OBJECTIVE: Epilepsy is a global public health concern, with the majority of cases occurring in lower- and middle-income countries where the treatment gap remains formidable. In this study, we simultaneously explore how beliefs about epilepsy causation, perceived barriers to care, seizure disorder characteristics, and demographics influence the initial choice of healthcare for epilepsy and its impact on attaining biomedical care (BMC). METHODS: This study utilized the baseline sample (nâ¯=â¯626) from a prospective cohort study of people with epilepsy (PWE) attending three public hospitals in Uganda (Mulago National Referral Hospital, Butabika National Referral Mental Hospital, and Mbarara Regional Referral Hospital) for epilepsy care. Patient and household demographics, clinical seizure disorder characteristics, and sociocultural questionnaires were administered. Logistic regression and principal component analyses (PCA) were conducted to examine associations with the choice of primary seizure treatment. RESULTS: The sample was 49% female, and 24% lived in rural settings. A biomedical health facility was the first point of care for 355 (56.7%) participants, while 229 (36.6%) first sought care from a traditional healer and 42 (6.7%) from a pastoral healer. Preliminary inspection of candidate predictors using relaxed criteria for significance (pâ¯<â¯0.20) identified several factors potentially associated with a greater odds of seeking BMC first. Demographic predictors included older caredriver (decision-maker for the participant) age (odds ratio [OR]: 1.01, 95% confidence interval [CI]: [0.99, 1.02], p-value: 0.09), greater caredriver education level (ORâ¯=â¯1.21, 95% CI: [1.07, 1.37], p-valueâ¯=â¯0.003), and lower ratio of sick to healthy family members (ORâ¯=â¯0.77 [0.56, 1.05], Pâ¯=â¯0.097). For clinical predictors, none of the proposed predictors associated significantly with seeking BMC first. Self-report causation predictors associated with a greater odds of seeking BMC first included higher belief in biological causes of epilepsy (ORâ¯=â¯1.31 [0.92, 1.88], Pâ¯=â¯0.133) and lower belief in socio-spiritual causes of epilepsy (ORâ¯=â¯0.68 [0.56, 0.84], Pâ¯<â¯0.001). In the multivariate model, only higher caredriver education (ORâ¯=â¯1.19 [1.04, 1.36], Pâ¯=â¯0.009) and lower belief in socio-spiritual causes of epilepsy (ORâ¯=â¯0.69 [0.56, 0.86], Pâ¯<â¯0.01) remained as predictors of seeking BMC first. Additionally, PCA revealed a pattern which included high income with low beliefs in nonbiological causes of epilepsy as being associated with seeking BMC first (ORâ¯=â¯1.32 [1.12, 1.55], pâ¯=â¯0.001). Despite reaching some form of care faster, individuals seeking care from traditional or pastoral healers experienced a significant delay to eventual BMC (Pâ¯<â¯0.001), with an average delay of more than two years (traditional healer: 2.53â¯years [1.98, 3.24]; pastoral care: 2.18 [1.21, 3.91]). CONCLUSIONS: Coupled with low economic and educational status, belief in spiritual causation of epilepsy is a dominant determinant of opting for traditional or pastoral healing over BMC, regardless of concurrent belief in biological etiologies. There is a prolonged delay to eventual BMC for PWE who begin their treatment seeking with nonallopathic providers, and although nonallopathic healers provide PWE with benefits not provided by BMC, this notable delay likely prevents earlier administration of evidence-based care with known efficacy. Based on these findings, initiatives to increase public awareness of neurobiological causes of epilepsy and effectiveness of biomedical drug treatments may be effective in preventing delays to care, as would programs designed to facilitate cooperation and referral among traditional, faith-based, and biomedical providers. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".
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Epilepsia , Aceptación de la Atención de Salud , Atención a la Salud , Epilepsia/epidemiología , Epilepsia/terapia , Femenino , Humanos , Masculino , Estudios Prospectivos , Uganda/epidemiologíaRESUMEN
OBJECTIVE: Epilepsy, a neurological disorder with effective biomedical treatment, remains largely untreated in Uganda. Potential reasons for this treatment gap (TG) include limited access to trained providers and clinics, social stigmata of seizures, cultural beliefs, or lack of public understanding of epilepsy as a treatable condition. The current study aimed to formally evaluate barriers faced by people with epilepsy (PWE) in Uganda when seeking biomedical care. METHODS: In a cross-sectional study, 435 participants drawn from a community prevalence study were enrolled. We included participants reporting a history of recurrent seizures suggestive of epilepsy, who completed a survey about barriers to obtaining care for their symptoms. Principal axis factor analysis (PFA) using a promax rotation was conducted for data reduction. Frequencies of barrier factors were compared across those who did not seek care for epilepsy (nâ¯=â¯228), those who sought care from biomedical facilities (nâ¯=â¯166), and those who sought care from a traditional or pastoral healer (nâ¯=â¯41). RESULTS: The PFA yielded a five-factor solution: 1) logistical and actual costs; 2) treatment effectiveness; 3) influence of the opinion of others; 4) doctors' care; and 5) contextual factors impacting decision-making. Variables related to logistical and actual costs were most endorsed. Comparison of groups by care sought did not reveal a difference in endorsement of factors, with the exception that those who sought biomedical care were more likely to endorse factors related to doctors' care compared with those that sought care from traditional or pastoral healers (Pâ¯=â¯.005). CONCLUSIONS: People with repetitive seizures in Uganda report several barriers to obtaining biomedical care in Uganda, with those related to practical and actual costs endorsed the most. It is imperative that interventions developed to reduce the TG in Uganda consider these practical issues to improve access to effective epilepsy care. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda.
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Epilepsia , Estudios Transversales , Epilepsia/epidemiología , Epilepsia/terapia , Humanos , Encuestas y Cuestionarios , Uganda/epidemiologíaRESUMEN
BACKGROUND: Traumatic Brain Injury (TBI) is the most common cause of injury-related death and disability globally, and a common sequelae is cognitive impairment. Addressing post-TBI cognitive deficits is crucial because they affect rehabilitation outcomes, but doing this requires valid and reliable cognitive assessment measures. However, no such instrument has been validated in Tanzania's TBI population. Mini-Mental State Examination (MMSE) and Montreal Cognitive Assessment (MoCA) are two commonly used instruments to measure cognitive impairment, and there have been a few studies reporting their use in post-TBI cognitive assessment. Our aim was to report the psychometric properties of the Swahili version of both scales amongst the TBI population in Tanzania. METHODS: A cross-cultural adaptation committee participated in the translation and content validation process for both questionnaires. Our patient sample consisted of 192 adults with TBI who were admitted to Kilimanjaro Christian Medical Center (KCMC) in Tanzania. Confirmatory factor analysis, reliability and external validity were evaluated. RESULTS: MoCA showed adequate factor loadings (values > 0.50 for all items except items 7 & 10) and adequate reliability (values > 0.70). Factor loadings for most of the MMSE items were below 0.5 and internal consistency was medium (< 0.7). Polychoric correlation between MMSE and MoCA was strong, positive and statistically significant (r = 0.68, p = 0.001); correlation with the cognitive subscale of FIM indicated moderately positive relationships - MMSE (r = 0.35, p = 0.001) and MoCA (r = 0.43, p = 0.001). CONCLUSIONS: With the exception of the language and memory items, MoCA is a valid and reliable instrument for cognitive impairment screening in Tanzania's adult TBI population. On the other hand, MMSE does not appear to be an appropriate tool in this patient group, but its positive correlations with MoCA and cFIM indicate similar theoretical concepts. Both instruments require further validation studies to prove their predictive ability for screening cognitive impairment before they are considered suitable for clinical use.
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Lesiones Traumáticas del Encéfalo , Disfunción Cognitiva/diagnóstico , Comparación Transcultural , Pruebas de Estado Mental y Demencia , Psicometría , Adulto , Lesiones Traumáticas del Encéfalo/complicaciones , Lesiones Traumáticas del Encéfalo/diagnóstico , Lesiones Traumáticas del Encéfalo/terapia , Trastornos del Conocimiento/diagnóstico , Trastornos del Conocimiento/etiología , Disfunción Cognitiva/etiología , Femenino , Humanos , Lenguaje , Masculino , Persona de Mediana Edad , Sistema de Registros , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Tanzanía , Traducciones , Adulto JovenRESUMEN
Lesion-symptom correlations shaped the early understanding of cortical localization. The classic Broca-Wernicke model of cortical speech and language organization underwent a paradigm shift in large part due to advances in brain mapping techniques. This initially started by demonstrating that the cortex was excitable. Later, advancements in neuroanesthesia led to awake surgery for epilepsy focus and tumor resection, providing neurosurgeons with a means of studying cortical and subcortical pathways to understand neural architecture and obtain maximal resection while avoiding so-called critical structures. The aim of this historical review is to highlight the essential role of direct electrical stimulation and cortical-subcortical mapping and the advancements it has made to our understanding of speech and language cortical organization. Specifically, using cortical and subcortical mapping, neurosurgeons shifted from a localist view in which the brain is composed of rigid functional modules to one of dynamic and integrative large-scale networks consisting of interconnected cortical subregions.
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Mapeo Encefálico/historia , Corteza Cerebral , Lenguaje/historia , Red Nerviosa , Neurocirujanos/historia , Habla , Vigilia , Corteza Cerebral/anatomía & histología , Corteza Cerebral/fisiología , Estimulación Eléctrica , Historia del Siglo XIX , Humanos , Red Nerviosa/anatomía & histología , Red Nerviosa/fisiologíaRESUMEN
OBJECTIVE: The purpose of this study was to determine if patients with traumatic brain injury (TBI) in low- and middle-income countries who receive surgery have better outcomes than patients with TBI who do not receive surgery, and whether this differs with severity of injury. METHODS: The authors generated a series of Kaplan-Meier plots and performed multiple Cox proportional hazard models to assess the relationship between TBI surgery and TBI severity. The TBI severity was categorized using admission Glasgow Coma Scale scores: mild (14, 15), moderate (9-13), or severe (3-8). The authors investigated outcomes from admission to hospital day 14. The outcome considered was the Glasgow Outcome Scale-Extended, categorized as poor outcome (1-4) and good outcome (5-8). The authors used TBI registry data collected from 2013 to 2017 at a regional referral hospital in Tanzania. RESULTS: Of the final 2502 patients, 609 (24%) received surgery and 1893 (76%) did not receive surgery. There were significantly fewer road traffic injuries and more violent causes of injury in those receiving surgery. Those receiving surgery were also more likely to receive care in the ICU, to have a poor outcome, to have a moderate or severe TBI, and to stay in the hospital longer. The hazard ratio for patients with TBI who underwent operation versus those who did not was 0.17 (95% CI 0.06-0.49; p < 0.001) in patients with moderate TBI; 0.2 (95% CI 0.06-0.64; p = 0.01) for those with mild TBI, and 0.47 (95% CI 0.24-0.89; p = 0.02) for those with severe TBI. CONCLUSIONS: Those who received surgery for their TBI had a lower hazard for poor outcome than those who did not. Surgical intervention was associated with the greatest improvement in outcomes for moderate head injuries, followed by mild and severe injuries. The findings suggest a reprioritization of patients with moderate TBI-a drastic change to the traditional practice within low- and middle-income countries in which the most severely injured patients are prioritized for care.
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Lesiones Traumáticas del Encéfalo/mortalidad , Lesiones Traumáticas del Encéfalo/cirugía , Adolescente , Adulto , Lesiones Traumáticas del Encéfalo/complicaciones , Estudios Transversales , Femenino , Escala de Coma de Glasgow , Hospitalización , Humanos , Masculino , Persona de Mediana Edad , Derivación y Consulta , Estudios Retrospectivos , Análisis de Supervivencia , Tanzanía , Resultado del Tratamiento , Adulto JovenRESUMEN
BACKGROUND: Community services and supports are essential for children transitioning home to recover from the hospital after surgery. This study assessed the availability and geographic capacity of rehabilitation, assistive devices, familial support, and school reintegration programs for school-aged children in Uganda with identified surgical need. METHODS: This study assessed the geographic epidemiology and spatial analysis of resource availability in communities in Uganda. Participants were children with identified surgical need using the Surgeons OverSeas Assessment of Surgical need (SOSAS). Community-based resources available to children and adolescents after surgery in Uganda were identified using publicly available data sources and searching for resources through consultation with in-country collaborators We sought resources available in all geographic regions for a variety of services. RESULTS: Of 1082 individuals surveyed aged 5 to 14 yearsr, 6.2% had identified surgical needs. Pediatric surgical conditions were most prevalent in the Northern and Central regions of Uganda. Of the 151 community-based services identified, availability was greatest in the Central region and least in the Northern region, regardless of type. Assuming 30% of children with surgical needs will need services, a maximum of 50.1% of these children would have access to the needed services in the extensive capacity estimates, while only 10.0% would have access in the minimal capacity estimates. The capacity varied dramatically by region with the Northern region having much lower capacity in all scenarios as compared to the Central, Eastern, or Western regions. CONCLUSIONS: Our study found that beyond the city of Kampala in the Central region, community-based services were severely lacking for school-aged children in Uganda. Increased pediatric surgical capacity to additional hospitals in Uganda will need to be met with increased availability and access to community-based services to support recovery and community re-integration.
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Integración a la Comunidad , Accesibilidad a los Servicios de Salud , Necesidades y Demandas de Servicios de Salud , Procedimientos Quirúrgicos Operativos/rehabilitación , Adolescente , Niño , Preescolar , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Pediatría , Prevalencia , Uganda/epidemiologíaRESUMEN
OBJECTIVE: Causes, clinical presentation, management, and outcomes of chronic subdural hematoma (CSDH) in low- and middle-income countries are not well characterized in the literature. Knowledge regarding these factors would be beneficial in the development and implementation of effective preventive and management measures for affected patients. The authors conducted a study to gain a better understanding of these factors in a low-income setting. METHODS: This prospective study was performed at Mbarara Regional Referral Hospital (MRRH) in Uganda between January 2014 and June 2017. Patients of any age who presented and were diagnosed with CSDH during the aforementioned time period were included in the study. Variables were collected from patients' files at discharge and follow-up clinic visits. The primary outcome of interest was death. Secondary outcomes of interest included discharge Glasgow Coma Scale (GCS) score, ICU admission, wound infection, and CSDH recurrence. RESULTS: Two hundred five patients, the majority of whom were male (147 [72.8%]), were enrolled in the study. The mean patient age was 60.2 years (SD 17.7). Most CSDHs occurred as a result of motor vehicle collisions (MVCs) and falls, 35.6% (73/205) and 24.9% (51/205), respectively. The sex ratio and mean age varied depending on the mechanism of injury. Headache was the most common presenting symptom (89.6%, 173/193), whereas seizures were uncommon (11.5%, 23/200). Presenting symptoms differed by age. A total of 202 patients underwent surgical intervention with burr holes and drainage, and 22.8% (46) were admitted to the ICU. Two patients suffered a recurrence, 5 developed a postoperative wound infection, and 18 died. Admission GCS score was a significant predictor of the discharge GCS score (p = 0.004), ICU admission (p < 0.001), and death (p < 0.001). CONCLUSIONS: Trauma from an MVC is the commonest cause of CSDH among the young. For the elderly, falling is common, but the majority have CSDH with no known cause. Although the clinical presentation is broad, there are several pronounced differences based on age. Burr hole surgery plus drainage is a safe and reliable intervention. A low preoperative GCS score is a risk factor for ICU admission and death.
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Hematoma Subdural Crónico , Accidentes por Caídas , Accidentes de Tránsito , Factores de Edad , Anciano , Craneotomía , Países Desarrollados , Drenaje , Femenino , Escala de Coma de Glasgow , Cefalea/etiología , Hematoma Subdural Crónico/epidemiología , Hematoma Subdural Crónico/etiología , Hematoma Subdural Crónico/mortalidad , Hematoma Subdural Crónico/cirugía , Humanos , Masculino , Persona de Mediana Edad , Pobreza , Estudios Prospectivos , Distribución por Sexo , Resultado del Tratamiento , Uganda/epidemiologíaRESUMEN
OBJECTIVE: In addition to the rising burden of surgical disease globally, infrastructure and human resources for health remain a great challenge for low- and middle-income countries, especially in Uganda. In this study, the authors aim to explore the trends of neurosurgical care at a regional referral hospital in Uganda and assess the long-term impact of the institutional collaboration between Mulago National Referral Hospital and Duke University. METHODS: An interrupted time series is a quasi-experimental design used to evaluate the effects of an intervention on longitudinal data. The authors applied this design to evaluate the trends in monthly mortality rates for neurosurgery patients at Mbarara Regional Referral Hospital (MRRH) from March 2013 to October 2015. They used segmented regression and autoregressive integrated moving average models for the analysis. RESULTS: Over the study timeframe, MRRH experienced significant increases in referrals received (from 117 in 2013 to 211 in 2015), neurosurgery patients treated (from 337 in 2013 to 625 in 2015), and operations performed (from 61 in 2013 to 173 in 2015). Despite increasing patient volumes, the hospital achieved a significant reduction in hospital mortality during 2015 compared to prior years (p value = 0.0039). CONCLUSIONS: This interrupted time series analysis study showed improving trends of neurosurgical care in Western Uganda. There is a steady increase in volume accompanied by a sharp decrease in mortality through the years. Multiple factors are implicated in the significant increase in volume and decrease in mortality, including the addition of a part-time neurosurgeon, improvement in infrastructure, and increased experience. Further in-depth prospective studies exploring seasonality and long-term outcomes are warranted.