Prevalence and factors associated with psychosis among adults with epilepsy at a tertiary hospital in Uganda, cross-sectional study.

BACKGROUND: Psychotic disorders are prevalent among people with epilepsy compared to the general population. However, there is limited information regarding psychosis among people with epilepsy in Uganda. This study therefore determined the prevalence and associated factors of psychosis among adults with epilepsy attending Butabika National Referral Mental Hospital in Uganda. METHODS: This was a cross-sectional study involving adults with epilepsy. The diagnosis of psychosis was assessed using the Mini-International Neuropsychiatric Interview, module for Psychotic disorders. Logistic regression analysis identified factors associated with psychosis. RESULTS: Out of 250 participants, 6.8% had psychosis and 13.6% had depression. Psychosis was significantly associated with older age, greater perceived stigma and substance use. CONCLUSION: Psychosis affects nearly 7% of adults with epilepsy in Uganda especially among those who are older, with perceived stigma and substance use. Routine screening and early intervention to management of psychosis in PWE is highly recommended.

Prevalence and predictors of post-stroke cognitive impairment among stroke survivors in Uganda.

BACKGROUND: Little is known about the characteristics and determinants of post-stroke cognitive impairment in residents of low- and middle-income countries. The objective of this study was to determine the frequencies, patterns, and risk factors for cognitive impairment in a cross-sectional study of consecutive stroke patients cared for at Uganda's Mulago Hospital, located in sub-Saharan Africa. METHODS: 131 patients were enrolled a minimum of 3-months after hospital admission for stroke. A questionnaire, clinical examination findings, and laboratory test results were used to collect demographic information and data on vascular risk factors and clinical characteristics. Independent predictor variables associated with cognitive impairment were ascertained. Stroke impairments, disability, and handicap were assessed using the National Institute of Health Stroke Scale (NIHSS), Barthel Index (BI), and modified Rankin scale (mRS), respectively. The Montreal Cognitive Assessment (MoCA) was used to assess participants' cognitive function. Stepwise multiple logistic regression was used to identify variables independently associated with cognitive impairment. RESULTS: The overall mean MoCA score was 11.7-points (range 0.0-28.0-points) for 128 patients with available data of whom 66.4% were categorized as cognitively impaired (MoCA < 19-points). Increasing age (OR 1.04, 95% CI 1.00-1.07; p = 0.026), low level of education (OR 3.23, 95% CI 1.25-8.33; p = 0.016), functional handicap (mRS 3-5; OR 1.84, 95% CI 1.28-2.63; p < 0.001) and high LDL cholesterol (OR 2.74, 95% CI 1.14-6.56; p = 0.024) were independently associated with cognitive impairment. CONCLUSIONS: Our findings highlight the high burden and need for awareness of cognitive impairment in post stroke populations in the sub-Saharan region and serve to emphasize the importance of detailed cognitive assessment as part of routine clinical evaluation of patients who have had a stroke.

"Walking the Journey Together": Creating a unique learning module in provider-patient communication for the care of epilepsy in Uganda.

OBJECTIVE: This report documents the creation of a practical communication skills module about epilepsy care, specifically targeted at first-line care providers who treat patients with epilepsy in Uganda. METHODS: Our team conducted semi-structured interviews, utilizing Zoom video conferencing, with Ugandan physicians specializing in epilepsy care. Our interview guide promoted a semi-structured conversational interview that explored aspects related to developing a patient-provider relationship, how epilepsy is described in a culturally appropriate manner, exploration of alternative treatments, the impact of the stigma of epilepsy, and facilitators and barriers to antiepileptic drug treatment adherence. Each interview was then transcribed, and an inductive thematic content analysis approach was utilized to facilitate the development of thematic communication and care subcategories. The resulting PowerPoint presentation included numerous short audio clips of our Ugandan experts suggesting effective ways of communicating with patients and their families. RESULTS: Our interviews with experts yielded valuable results to customize the WHO mhGAP v2.0 training program to be culturally relevant and effective in Uganda. The educational content consisted of topic summaries integrated with audio clips taken directly from our interviews with the Ugandan providers. Six themes emerged that would serve as the outline for the communication module we co-created with our Ugandan colleagues: The six major themes of the module included: (1) Greeting the patient, (2) Getting the story, (3) Traditional healers, (4) Stigma of epilepsy, (5) Explaining epilepsy, and (6) Treatment adherence. CONCLUSIONS: The communications skills teaching module addresses the most critical aspects of communicating with patients and families living with epilepsy. The format of the presentation, which includes the written and spoken words of experts in epilepsy care, provides a practical approach to the provider-patient interaction, and confronts the stigma associated with this disease. This formatting highlights an effective way for international groups to co-create content in a culturally effective manner.

Epilepsy among the older population of sub-Saharan Africa: Analysis of the global burden of disease database.

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.

Evaluation of a tailored epilepsy training program for healthcare providers in Uganda.

OBJECTIVE: This study evaluated an epilepsy training program for healthcare workers that was designed to improve their knowledge of epilepsy, its treatment, and its psychosocial effects. METHODS: This single group, before and after survey was conducted in three regional referral hospitals in Uganda. Healthcare workers participated in a 3-day epilepsy training program and were assessed immediately prior to and following the program using a 39-item epilepsy knowledge questionnaire. Pretest to posttest changes and acceptability ratings were analyzed. RESULTS: Twenty healthcare workers from each of our three study hospitals (N = 60) participated in the study. The average age of the participants was 39.9 years (SD = 9.6). Female participants constituted 45% of the study population. There was a significant improvement in the knowledge of healthcare workers about epilepsy following the training (t = 7.15, p < 0.001). Improvement was seen across the three sub-scores of general knowledge about epilepsy, assessment and diagnosis of epilepsy, and management of epilepsy. Subgroup analysis showed that both high and low baseline scorers showed significant training gains. CONCLUSIONS: The study suggested that our training program was effective in improving the knowledge of health workers about epilepsy and that participants had favorable impressions of the program. Further work is needed to determine if the knowledge is retained over time and if the change in knowledge translates into a change in clinical practice.

Burden, risk factors, neurosurgical evacuation outcomes, and predictors of mortality among traumatic brain injury patients with expansive intracranial hematomas in Uganda: a mixed methods study design.

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.

Strategies for specialty training of healthcare professionals in low-resource settings: a systematic review on evidence from stroke care.

BACKGROUND: The greatest mortality and disability from stroke occurs in low- and middle-income countries. A significant barrier to implementation of best stroke care practices in these settings is limited availability of specialized healthcare training. We conducted a systematic review to determine the most effective methods for the provision of speciality stroke care education for hospital-based healthcare professionals in low-resource settings. METHODS: We followed the PRISMA guidelines for systematic reviews and searched PubMed, Web of Science and Scopus for original clinical research articles that described or evaluated stroke care education for hospital-based healthcare professionals in low-resource settings. Two reviewers screened titles/abstracts and then full text articles. Three reviewers critically appraised the articles selected for inclusion. RESULTS: A total of 1,182 articles were identified and eight were eligible for inclusion in this review; three were randomized controlled trials, four were non-randomized studies, and one was a descriptive study. Most studies used several approaches to education. A "train-the-trainer" approach to education was found to have the most positive clinical outcomes (lower overall complications, lengths of stay in hospital, and clinical vascular events). When used for quality improvement, the "train-the-trainer" approach increased patient reception of eligible performance measures. When technology was used to provide stroke education there was an increased frequency in diagnosis of stroke and use of antithrombotic treatment, reduced door-to-needle times, and increased support for decision making in medication prescription was reported. Task-shifting workshops for non-neurologists improved knowledge of stroke and patient care. Multidimensional education demonstrated an overall care quality improvement and increased prescriptions for evidence-based therapies, although, there were no significant differences in secondary prevention efforts, stroke reoccurrence or mortality rates. CONCLUSIONS: The "train the trainer" approach is likely the most effective strategy for specialist stroke education, while technology is also useful if resources are available to support its development and use. If resources are limited, basic knowledge education should be considered at a minimum and multidimensional training may not be as beneficial. Research into communities of practice, led by those in similar settings, may be helpful to develop educational initiatives with relevance to local contexts.

Feasibility, acceptability, and efficacy of an adopted novel self-management intervention among people with epilepsy in Uganda.

BACKGROUND: Epilepsy is a common neurological condition characterized by poor quality of life and associated stigma. Studies in long-term health conditions suggest that self-management interventions improve the quality of life (QoL) and reduce the perceived stigma among people with epilepsy (PWE). Yet, the utilization of these interventions remains low in sub-Saharan Africa. OBJECTIVES: We investigated the feasibility, acceptability, and preliminary efficacy of an adopted novel self-management intervention, Self-management for people with epilepsy and a history of negative health events (SMART) among PWE in Uganda. DESIGN: A two-year, uncontrolled, prospective pilot study in Ugandans with epilepsy was conducted. PARTICIPANTS: Adults aged ≥ 18 years with epilepsy attending a neurology outpatient clinic were enrolled. INTERVENTION: Using a nurse led and peer educator interactions; nine self-management approach sessions (1 individual session and 8 group sessions) were conducted. MAIN OUTCOME MEASURES: The primary outcome was QoL, perceived stigma and depression in PWE at 24-month follow-up using the Quality Of Life In Epilepsy 31 (QOLIE-31) scale and perceived stigma using the Kilifi stigma score and Neurological disorders depression index for epilepsy (NDDI-E). RESULTS: There were 17 individuals and their caregivers who were enrolled into this study with a mean age of 23.47 (SD = 5.3) years. The study intervention was feasible and acceptable within our settings. Overall, quality of life, stigma level, depression, and seizure frequency in the past 30 days were significantly improved from the baseline scores before the intervention with p-values of <0.0001, <0.0001, 0.004, and <0.0001, respectively. SIGNIFICANCE: The SMART intervention engages individuals to actively participate in self-management, and can help reduce depressive symptom severity in PWE. Given the high morbidity and mortality associated with epilepsy, additional research is needed to better identify how SMART might be implemented in routine care settings.

Validity of the Personal Impact of Epilepsy Scale (PIES) in patients with epilepsy in Uganda.

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 (N = 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".

Stigma reduction interventions for epilepsy: A systematized literature review.

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".

Leveraging the lessons learned from studies on the cultural context of epilepsy care in Uganda: Opportunities and future directions.

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".

Epilepsy beliefs and misconceptions among patient and community samples in Uganda.

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".

Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study.

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 (n = 228), those who sought care from biomedical facilities (n = 166), and those who sought care from a traditional or pastoral healer (n = 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 (P = .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.

Pluralistic and singular causal attributions for epilepsy in Uganda.

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 (n = 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 (p < 0.01), the pluralistic group had the highest ratio of people in the household who needed assistance to those that could provide aid (p < 0.01), and there were significant differences in income across specific groups (p < 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".

Hospital-based epilepsy care in Uganda: A prospective study of three major public referral hospitals.

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 3 weeks, 3 months, and 6 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".

Sociocultural determinants and patterns of healthcare utilization for epilepsy care in Uganda.

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 (n = 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 (p < 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 (OR = 1.21, 95% CI: [1.07, 1.37], p-value = 0.003), and lower ratio of sick to healthy family members (OR = 0.77 [0.56, 1.05], P = 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 (OR = 1.31 [0.92, 1.88], P = 0.133) and lower belief in socio-spiritual causes of epilepsy (OR = 0.68 [0.56, 0.84], P < 0.001). In the multivariate model, only higher caredriver education (OR = 1.19 [1.04, 1.36], P = 0.009) and lower belief in socio-spiritual causes of epilepsy (OR = 0.69 [0.56, 0.86], P < 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 (OR = 1.32 [1.12, 1.55], p = 0.001). Despite reaching some form of care faster, individuals seeking care from traditional or pastoral healers experienced a significant delay to eventual BMC (P < 0.001), with an average delay of more than two years (traditional healer: 2.53 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".

Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers.

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

Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review.

OBJECTIVE: This systematic review identified papers that described epilepsy misconceptions or stigma in sub-Saharan Africa (SSA) and research interventions focused on reducing these misconceptions. MATERIALS AND METHODS: Publications in the English language from January 2000 to October 2017 that described original research conducted in SSA on misconceptions about epilepsy were utilized. RESULTS: Twenty-three publications were identified. Studies were from Nigeria (N = 4), Cameroon (N = 4), Uganda (N = 3), Zambia (N = 2), Ethiopia (N = 2), Tanzania (N = 2), Kenya (N = 2), Ghana, Zimbabwe, Benin, and Mali (N = 1 each). The studies included assessments of misconceptions among healthcare providers and medical students (N = 3), high school students (N = 2), teachers (N = 2), the general public (N = 10), people with epilepsy (N = 7), and traditional healers (N = 1). Only two studies had stigma-focused interventions. Majority of the studies reported limitations to socialization with people with epilepsy and various beliefs associated with epilepsy. CONCLUSIONS: Epilepsy misconceptions, stigmatizing cultural beliefs, and perceptions were widely prevalent in SSA, and there are a few studies targeting epilepsy stigma. Existing stigma-reduction educational approaches may be impractical for general population implementation. Scalable approaches to reduce stigma are urgently needed within SSA.

Influence of Dietary Salt Knowledge, Perceptions, and Beliefs on Consumption Choices after Stroke in Uganda.

BACKGROUND: Previous research on Uganda's poststroke population revealed that their level of dietary salt knowledge did not lead to healthier consumption choices. PURPOSE: Identify barriers and motivators for healthy dietary behaviors and evaluate the understanding of widely accepted salt regulation mechanisms among poststroke patients in Uganda. METHODS: Convergent parallel mixed methods triangulation design comprised a cross-sectional survey (n = 81) and 8 focus group discussions with 7-10 poststroke participants in each group. We assessed participant characteristics and obtained insights into their salt consumption attitudes, perceptions, and knowledge. Qualitative responses were analyzed using an inductive approach with thematic analytic procedures. Relationships between healthy dietary salt compliance, dietary salt knowledge, and participant characteristics were assessed using logistic regression analyses. RESULTS: Healthy dietary salt consumption behaviors were associated with basic salt knowledge (P < .0001), but no association was found between compliance and salt disease-related knowledge (P = .314). Only 20% and 7% obtained health-related salt knowledge from their health facility and educational sources, respectively, whereas 44% obtained this information from media personalities; 92% of participants had no understanding of nutrition labels, and only 25% of the study population consumed potash-an inexpensive salt substitute that is both rich in potassium and low in sodium. CONCLUSION: One barrier to healthy dietary consumption choices among Uganda's stroke survivors is a lack of credible disease-related information. Improving health-care provider stroke-related dietary knowledge in Uganda and encouraging the use of potash as a salt substitute would help reduce hypertension and thereby lower the risk of stroke.

Prevalence and incidence of neurological disorders among adult Ugandans in rural and urban Mukono district; a cross-sectional study.

BACKGROUND: The burden of neurological diseases is increasing in developing countries. However, there is a prominent scarcity of literature on the incidence of neurological diseases in sub-Saharan Africa. This study was therefore undertaken to determine the prevalence and incidence of neurological diseases in this setting to serve as a baseline for planning and care for neurological disorders in Uganda. METHODS: The study was conducted within rural and urban Mukono district, east of Kampala city of Uganda, central region. Over a period of six months, a cross sectional survey was conducted and screening was performed using a standardized questionnaire. All subjects with neurological symptoms and signs were reviewed by a team of neurologists and neurological diagnoses made. RESULTS: Of the 3000 study subjects, 50.3% (1510/3000) were from the rural setting. Out of the participants screened, 67.4% were female, with a median age of 33 years. Among the 98 subjects with confirmed neurological disorders, the frequency of diseases was as follows; peripheral neuropathy (46.2%), chronic headaches (26.4%), and epilepsy (8.5%), followed by pain syndromes (7.5%), stroke (6.6%) and tremors/Parkinson disease (3.8%). The crude prevalence rates of these disorders (95% CI) were 14.3% (8.5-24.1); 13.3% (7.7-22.8); 33.7% (23.9-47.4) for stroke, epilepsy and peripheral neuropathy respectively. Peripheral neuropathy followed by chronic headaches had the highest estimated incidence/1000 years. Stroke had an estimated incidence of 3.6 new cases with 95% CI of (2.1-6.1)/1000 years. CONCLUSION: Peripheral neuropathy, chronic headaches and epilepsy disorders are major causes of morbidity in Sub-Saharan settings. There is an urgent need of more robust and powered studies to determine the incidence of these diseases.