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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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BACKGROUND: Expansive intracranial hematomas (EIH) following traumatic brain injury (TBI) continue to be a public health problem in Uganda. Data is limited regarding the neurosurgical outcomes of TBI patients. This study investigated the neurosurgical outcomes and associated risk factors of EIH among TBI patients at Mulago National Referral Hospital (MNRH). METHODS: A total of 324 subjects were enrolled using a prospective cohort study. Socio-demographic, risk factors and complications were collected using a study questionnaire. Study participants were followed up for 180 days. Univariate, multivariable, Cox regression analyses, Kaplan Meir survival curves, and log rank tests were sequentially conducted. P-values of < 0.05 at 95% Confidence interval (CI) were considered to be statistically significant. RESULTS: Of the 324 patients with intracranial hematomas, 80.6% were male. The mean age of the study participants was 37.5 ± 17.4 years. Prevalence of EIH was 59.3% (0.59 (95% CI: 0.54 to 0.65)). Participants who were aged 39 years and above; PR = 1.54 (95% CI: 1.20 to 1.97; P = 0.001), and those who smoke PR = 1.21 (95% CI: 1.00 to 1.47; P = 0.048), and presence of swirl sign PR = 2.26 (95% CI: 1.29 to 3.95; P = 0.004) were found to be at higher risk for EIH. Kaplan Meier survival curve indicated that mortality at the 16-month follow-up was 53.4% (95% CI: 28.1 to 85.0). Multivariate Cox regression indicated that the predictors of mortality were old age, MAP above 95 mmHg, low GCS, complications such as infection, spasticity, wound dehiscence, CSF leaks, having GOS < 3, QoLIBRI < 50, SDH, contusion, and EIH. CONCLUSION: EIH is common in Uganda following RTA with an occurrence of 59.3% and a 16-month higher mortality rate. An increased age above 39 years, smoking, having severe systemic disease, and the presence of swirl sign are independent risk factors. Old age, MAP above 95 mmHg, low GCS, complications such as infection, spasticity, wound dehiscence, CSF leaks, having a GOS < 3, QoLIBRI < 50, ASDH, and contusion are predictors of mortality. These findings imply that all patients with intracranial hematomas (IH) need to be monitored closely and a repeat CT scan to be done within a specific period following their initial CT scan. We recommend the development of a protocol for specific surgical and medical interventions that can be implemented for patients at moderate and severe risk for EIH.
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Lesiones Traumáticas del Encéfalo , Contusiones , Humanos , Masculino , Adulto Joven , Adulto , Persona de Mediana Edad , Femenino , Estudios Prospectivos , Uganda/epidemiología , Lesiones Traumáticas del Encéfalo/complicaciones , Lesiones Traumáticas del Encéfalo/cirugía , Factores de Riesgo , Hematoma , Complicaciones Posoperatorias , Contusiones/complicaciones , Escala de Coma de GlasgowRESUMEN
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: 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
OBJECTIVE: To quantify the burden of surgical conditions in Uganda. BACKGROUND: Data on the burden of disease have long served as a cornerstone to health policymaking, planning, and resource allocation. Population-based data are the gold standard, but no data on surgical burden at a national scale exist; therefore, we adapted the Surgeons OverSeas Assessment of Surgical Need survey and conducted a nation-wide, cross-sectional survey of Uganda to quantify the burden of surgically treatable conditions. METHODS: The 2-stage cluster sample included 105 enumeration areas, representing 74 districts and Kampala Capital City Authority. Enumeration occurred from August 20 to September 12, 2014. In each enumeration area, 24 households were randomly selected; the head of the household provided details regarding any household deaths within the previous 12 months. Two household members were randomly selected for a head-to-toe verbal interview to determine existing untreated and treated surgical conditions. RESULTS: In 2315 households, we surveyed 4248 individuals: 461 (10.6%) reported 1 or more conditions requiring at least surgical consultation [95% confidence interval (CI) 8.9%-12.4%]. The most frequent barrier to surgical care was the lack of financial resources for the direct cost of care. Of the 153 household deaths recalled, 53 deaths (34.2%; 95% CI 22.1%-46.3%) were associated with surgically treatable signs/symptoms. Shortage of time was the most frequently cited reason (25.8%) among the 11.6% household deaths that should have, but did not, receive surgical care (95% CI 6.4%-16.8%). CONCLUSIONS: Unmet surgical need is prevalent in Uganda. There is an urgent need to expand the surgical care delivery system starting with the district-level hospitals. Routine surgical data collection at both the health facility and household level should be implemented.
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Costo de Enfermedad , Países en Desarrollo , Necesidades y Demandas de Servicios de Salud , Encuestas Epidemiológicas , Procedimientos Quirúrgicos Operativos/estadística & datos numéricos , Adolescente , Adulto , Anciano , Niño , Preescolar , Estudios Transversales , Femenino , Política de Salud , Necesidades y Demandas de Servicios de Salud/economía , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Uganda , Adulto JovenRESUMEN
BACKGROUND: Globally, a staggering five billion people lack access to adequate surgical care. Sub-Saharan Africa represents one of the regions of greatest need. We sought to understand how geographic factors related to unmet surgical need (USN) in Uganda. METHODS: We performed a geographic information system analysis of a nationwide survey on surgical conditions performed in 105 enumeration areas (EAs) representing the national population. At the district level, we determined the spatial autocorrelation of the following study variables: prevalence of USN, hub distance (distance from EA to the nearest surgical center), area of coverage (geographic catchment area of each center), tertiary facility transport time (average respondent-reported travel time), and care availability (rate of hospital beds by population and by district). We then used local indicators of spatial association (LISA) and spatial regression to identify any significant clustering of these study variables among the districts. RESULTS: The survey enumerated 4248 individuals. The prevalence of USN varied from 2.0-45 %. The USN prevalence was highest in the Northern and Western Regions. Moran's I bivariate analysis indicated a positive correlation between USN and hub distance (p = 0.03), area of coverage (p = 0.02), and facility transport time (p = 0.03). These associations were consistent nationally. The LISA analysis showed a high degree of clustering among sets of districts in the Northern Sub-Region. CONCLUSIONS: This study demonstrates a statistically significant association between USN and the geographic variables examined. We have identified the Northern Sub-Region as the highest priority areas for financial investment to reduce this unmet surgical disease burden.
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Sistemas de Información Geográfica , Instituciones de Salud/provisión & distribución , Necesidades y Demandas de Servicios de Salud , Área sin Atención Médica , Humanos , Regresión Espacial , Procedimientos Quirúrgicos Operativos , UgandaRESUMEN
PURPOSE: Little is known about the prevalence of pediatric surgical conditions in low- and middle-income countries. Many children never seek medical care, thus the true prevalence of surgical conditions in children in Uganda is unknown. The objective of this study was to determine the prevalence of surgical conditions in children in Uganda. METHODS: Using the Surgeons OverSeas Assessment of Surgical Need (SOSAS) survey, we enumerated 4248 individuals in 2315 households in 105 randomly selected clusters throughout Uganda. Children aged 0-18 were included if randomly selected from the household; for those who could not answer for themselves, parents served as surrogates. RESULTS: Of 2176 children surveyed, 160 (7.4 %) reported a currently untreated surgical condition. Lifetime prevalence of surgical conditions was 14.0 % (305/2176). The predominant cause of surgical conditions was trauma (48.4 %), followed by wounds (19.7 %), acquired deformities (16.2 %), and burns (12.5 %). Of 90 pediatric household deaths, 31.1 % were associated with a surgically treatable proximate cause of death (28/90 deaths). CONCLUSION: Although some trauma-related surgical burden among children can be adequately addressed at district hospitals, the need for diagnostics, human resources, and curative services for more severe trauma cases, congenital deformities, and masses outweighs the current capacity of hospitals and trained pediatric surgeons in Uganda.
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Encuestas de Atención de la Salud/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Evaluación de Necesidades/estadística & datos numéricos , Procedimientos Quirúrgicos Operativos/estadística & datos numéricos , Adolescente , Niño , Preescolar , Estudios Transversales , Femenino , Humanos , Lactante , Masculino , Prevalencia , UgandaRESUMEN
INTRODUCTION: The first step in improving surgical care delivery in low- and middle-income countries (LMICs) is quantifying surgical need. The Surgeons OverSeas Assessment of Surgical Need (SOSAS) is a validated household survey that has been previously implemented in three LMICs with great success. We implemented the SOSAS survey in Uganda, a medium-sized country with comparatively more language and ethnic group diversity. METHODS: The investigators partnered with the Performance Monitoring and Accountability 2020 (PMA2020) Uganda to access a data collection platform sampling 2520 households in 105 randomly selected enumeration areas. Due to geographic size consideration and language diversity, SOSAS's methodology was updated in three significant dimensions (1) technology, (2) staff management, and (3) questionnaire adaptations. RESULTS: The SOSAS survey was successfully implemented with non-medically trained but field proven research assistants. We sampled 2315 of 2402 eligible households (response rate 96.4 %) and 4248 of 4374 eligible individual respondents (response rate 97.1 %). The female-to-male ratio was 51.1-48.9 %. Total survey cost was USD 73,145 and data collection occurred in 14 days. DISCUSSION: SOSAS Uganda has demonstrated that non-medically trained, but university-educated, experienced researchers supervised by academic surgeons can successfully perform accurate data collection of SOSAS. SOSAS can be successfully implemented within larger and more diverse LMICs using existing national survey platforms, and SOSAS Uganda provides insights on how SOSAS can be executed specifically within other PMA2020 program countries.
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Recolección de Datos/métodos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Necesidades y Demandas de Servicios de Salud , Evaluación de Necesidades , Adolescente , Adulto , Anciano , Niño , Preescolar , Costos y Análisis de Costo , Etnicidad , Femenino , Geografía , Asistencia Técnica a la Planificación en Salud , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Pobreza , Cirujanos , Encuestas y Cuestionarios , Uganda , Universidades , Adulto JovenRESUMEN
OBJECTIVE: There has been a progressive growth of neurosurgery in Nigeria over the past 6 nulldecades. This study aims to comprehensively evaluate the state of neurosurgical practice, training, and research in the country. METHODS: We used a mixed-methods approach that combined a survey of neurosurgery providers and a systematic review of the neurosurgical literature in Nigeria. The 83-question online survey had 3 core sections for assessing capacity, training, and gender issues. The systematic review involved a search of 4 global databases and gray literature over a 60-year period. RESULTS: One hundred and forty-nine respondents (95% male) completed the survey (65.4%). Their age ranged from 20 to 68 years, with a mean of 41.8 (±6.9) years. Majority were from institutions in the nation's South-West region; 82 (55.0%) had completed neurosurgery residency training, with 76 (51%) employed as consultants; 64 (43%) identified as residents in training, 56 (37.6%) being senior residents, and 15 (10.1%) each held academic appointments as lecturers or senior lecturers. The literature review involved 1,023 peer-reviewed journal publications: 254 articles yielding data on 45,763 neurotrauma patients, 196 on 12,295 pediatric neurosurgery patients, and 127 on 8,425 spinal neurosurgery patients. Additionally, 147 papers provided data on 5,760 neuro-oncology patients, and 56 on 3,203 patients with neuro-vascular lesions. CONCLUSIONS: Our mixed-methods approach provided significant insights into the historical, contemporary, and future trends of neurosurgery in Nigeria. The results could form the foundation for policy improvement; health-system strengthening; better resource-planning, prioritization, and allocation; and more purposive collaborative engagement in Nigeria and other low- and middle-income countries.
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Neurocirugia , Nigeria , Humanos , Neurocirugia/educación , Femenino , Adulto , Masculino , Persona de Mediana Edad , Anciano , Adulto Joven , Procedimientos Neuroquirúrgicos/educación , Internado y Residencia , Investigación Biomédica , Encuestas y Cuestionarios , NeurocirujanosRESUMEN
OBJECTIVE: Traumatic brain injury (TBI) carries a major global burden of disease; however, it is well established that patients in low- and middle-income countries, such as those in Africa, have higher mortality rates. Pediatric TBI, specifically, is a documented cause for concern as injuries to the developing brain have been shown to lead to cognitive, psychosocial, and motor problems in adulthood. The purpose of this study was to investigate the reported demographics, causes, management, and outcomes of pediatric TBI in Africa. METHODS: A literature search was conducted using PubMed, Global Index Medicus, Embase, Scopus, Google Scholar, African Journals Online, and Web of Science. Various combinations of "traumatic brain injury," "head injury," "p(a)ediatric," "Africa," and country names were used. Relevant primary data published in the English language were included and subjected to a risk of bias analysis. Variables included age, sex, TBI severity, TBI cause, imaging findings, treatment, complications, and outcome. RESULTS: After screening, 45 articles comprising 11,635 patients were included. The mean patient age was 6.48 ± 2.13 years, and 66.3% of patients were male. Of patients with reported data, mild, moderate, and severe TBIs were reported in 57.6%, 14.5%, and 27.9% of patients, respectively. Road traffic accidents were the most reported cause of pediatric TBI (50.53%) followed by falls (25.18%). Skull fractures and intracerebral contusions were the most reported imaging findings (28.32% and 16.77%, respectively). The most reported symptoms included loss of consciousness (24.4%) and motor deficits (17.1%). Surgical management was reported in 28.66% of patients, with craniotomy being the most commonly reported procedure (15.04%). Good recovery (Glasgow Outcome Scale score 5, Glasgow Outcome Scale-Extended score 7-8) was reported in 47.17% of patients. Examination of the period post-2015 demonstrated increased spread in the literature regarding pediatric TBI in Africa. CONCLUSIONS: This study provides a comprehensive overview of the literature regarding pediatric TBI in Africa and how it has evolved alongside global neurosurgical efforts. Although there has been increased involvement from various African countries in the neurosurgical literature, there remains a relative paucity of data on this subject. Standardized reporting protocols for patient care may aid in future studies seeking to synthesize data. Finally, further studies should seek to correlate the trends seen in this study, with primary epidemiological data to gain deeper insight into the disease burden of pediatric TBI in Africa.
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Lesiones Traumáticas del Encéfalo , Traumatismos Craneocerebrales , Fracturas Craneales , Niño , Humanos , Masculino , Preescolar , Femenino , Lesiones Traumáticas del Encéfalo/epidemiología , Lesiones Traumáticas del Encéfalo/terapia , Lesiones Traumáticas del Encéfalo/diagnóstico , Traumatismos Craneocerebrales/complicaciones , Encéfalo , África/epidemiologíaRESUMEN
INTRODUCTION: Traumatic brain injury (TBI) accounts for the majority of Uganda's neurosurgical disease burden; however, invasive intracranial pressure (ICP) monitoring is infrequently used. Noninvasive monitoring could change the care of patients in such a setting through quick detection of elevated ICP. PURPOSE: Given the novelty of pupillometry in Uganda, this mixed methods study assessed the feasibility of pupillometry for noninvasive ICP monitoring for patients with TBI. METHODS: Twenty-two healthcare workers in Kampala, Uganda received education on pupillometry, practiced using the device on healthy volunteers, and completed interviews discussing pupillometry and its implementation. Interviews were assessed with qualitative analysis, while quantitative analysis evaluated learning time, measurement time, and accuracy of measurements by participants compared to a trainer's measurements. RESULTS: Most participants (79%) reported a positive perception of pupillometry. Participants described the value of pupillometry in the care of patients during examination, monitoring, and intervention delivery. Commonly discussed concerns included pupillometry's cost, understanding, and maintenance needs. Perceived implementation challenges included device availability and contraindications for use. Participants suggested offering continued education and engaging hospital leadership as implementation strategies. During training, the average learning time was 13.5 minutes (IQR 3.5), and the measurement time was 50.6 seconds (IQR 11.8). Paired t-tests to evaluate accuracy showed no statistically significant difference in comparison measurements. CONCLUSION: Pupillometry was considered acceptable for noninvasive ICP monitoring of patients with TBI, and pupillometer use was shown to be feasible during training. However, key concerns would need to be addressed during implementation to aid device utilization.
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Lesiones Traumáticas del Encéfalo , Estudios de Factibilidad , Presión Intracraneal , Humanos , Uganda , Masculino , Femenino , Monitoreo Fisiológico/métodos , Adulto , Presión Intracraneal/fisiología , Lesiones Traumáticas del Encéfalo/fisiopatología , Lesiones Traumáticas del Encéfalo/psicología , Personal de Salud , Pupila/fisiología , Persona de Mediana EdadRESUMEN
BACKGROUND: Nigeria has an inadequate number of neurosurgeons to meet the population's demand for neurosurgical care. Furthermore, few Nigerian neurosurgeons are female. This study sought to evaluate perceived barriers to pursuing neurosurgery among Nigerian trainees. METHODS: A 60-question survey was distributed electronically to medical students at the College of Medicine, University of Ibadan, and unspecialized intern physicians at the University College Hospital, Ibadan, Nigeria. Participation was voluntary. RESULTS: One hundred fifty-seven respondents participated in the survey. A greater proportion of males indicated an interest in neurosurgery than females (40% vs. 18%, P = 0.010). Over 75% of respondents identified decreased family and personal time, long work hours, and limited access to maternity or paternity leave as potential barriers to neurosurgery, with no differences by gender. Respondents overall saw being female and low-income as disadvantageous to pursuing neurosurgery in Nigeria. Although they universally viewed research as important in neurosurgery, 59% of respondents reported inadequate access to research opportunities; this did not vary by gender. However, 65% of female respondents reported that having a female neurosurgery mentor would increase their interest in neurosurgery (vs. 37% of males, P = 0.001). CONCLUSIONS: Nigerian medical trainees perceived the time commitment of neurosurgery as a major barrier to pursuing the specialty. Regardless of gender, they also reported low exposure to neurosurgery and inadequate access to research and mentorship opportunities. However, we found that enhanced female representation among neurosurgery mentors and improved work-life balance could increase interest in neurosurgery and help expand Nigeria's neurosurgical workforce.
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Selección de Profesión , Neurocirugia , Estudiantes de Medicina , Humanos , Nigeria , Femenino , Masculino , Neurocirugia/educación , Estudiantes de Medicina/psicología , Estudios Transversales , Adulto , Encuestas y Cuestionarios , Médicos/psicología , Neurocirujanos , Adulto JovenRESUMEN
INTRODUCTION: Uganda has a high demand for neurosurgical and neurological care. 78% of the over 50 million population reside in rural and remote communities where access to neurosurgical and neurological services is lacking. This study aimed to determine the feasibility, appropriateness, and usability of mobile neuro clinics (MNCs) in providing neurological care to rural and remote Ugandan populations. METHODS: Neurosurgery, neurology, and mobile health clinic providers participated in an education and interview session to assess the feasibility, appropriateness, and usability of the MNC intervention. A qualitative analysis of the interview responses using the constructs in the updated Consolidated Framework for Implementation Research was performed. Providers' opinions were weighted using average sentiment scores on a novel sentiment-weighted scale adapted from the CFIR. A stakeholder analysis was also performed to assess the power and interest of the actors described by the participants. RESULTS: Twenty-one healthcare providers completed the study. Participants discussed the potential benefits and concerns of MNCs as well as potential barriers and critical incidents that could jeopardize the intervention. Of the five CFIR domains evaluated, variables in the implementation process domain showed the highest average sentiment scores, followed by the implementation climate constructs, inner setting, innovation, and outer setting domains. Furthermore, many interested stakeholders were identified with diverse roles and responsibilities for implementing MNCs. These findings demonstrate that MNC innovation is feasible, appropriate, and usable. CONCLUSION: The findings of this study support the feasibility, appropriateness, and usability of MNCs in Uganda. However, integration of this innovation requires careful planning and stakeholder engagement at all levels to ensure the best possible outcomes.