ABSTRACT
BACKGROUND: Hispanic/Latino people with epilepsy may be at a differential risk of medical and psychiatric comorbidities given genetic, environmental, sociocultural, and quality of care factors. In people with epilepsy, comorbidities are especially crucial to investigate given the well-known impact on quality of life and risk of adverse outcomes. Yet, Hispanic/Latino Veterans with Epilepsy (HL-VWE) remain an understudied population. The present nationwide population study sought to investigate medical and psychiatric comorbidities in this group. METHODS: Data from the Veterans Health Administration (VHA) Corporate Data Warehouse administrative data were used to identify 56,556 VWE (5.7 % HL-VWE) using a one-year cross-sectional analysis of ICD codes. Elixhauser Comorbidity Index scores and psychiatric diagnoses were calculated based on ICD-9/ICD-10-CM diagnoses using a lookback period. Comparisons were made between HL-VWE and non-HL-VWE using chi-squared and student t-tests. Regression analyses were then performed to examine group differences while accounting for age. RESULTS: HL-VWE had higher probability of being diagnosed with several psychiatric conditions when accounting for age, including depression (OR 1.21, 95 % CI 1.13-1.31) and schizophrenia (OR 1.56, 95 % CI 1.31-1.84). There were no significant differences in medical comorbidities between the HL-VWE and non-HL-VWE groups. CONCLUSIONS: We present results from the largest known study of HL people with epilepsy examining their psychiatric and medical comorbidities and one of the first to specifically study HL-VWE. Compared to non-HL-VWE, the Hispanic/Latino group had comparable medical comorbidity, but higher rates of multiple psychiatric conditions. Results indicate a need for increased screening and interventions in this population to reduce psychiatric disease burden.
Subject(s)
Comorbidity , Epilepsy , Hispanic or Latino , Mental Disorders , Veterans , Humans , Epilepsy/epidemiology , Epilepsy/ethnology , Epilepsy/psychology , Male , Female , Veterans/statistics & numerical data , Middle Aged , Hispanic or Latino/statistics & numerical data , Adult , Aged , Mental Disorders/epidemiology , Cross-Sectional Studies , United States/epidemiology , Young AdultABSTRACT
OBJECTIVE: Hispanic/Latino people with epilepsy are a growing population that has been understudied in clinical epilepsy research. U.S. veterans are at a higher risk of epilepsy due to greater exposures including traumatic brain injury. Hispanic/Latino Veterans with Epilepsy (HL-VWEs) represent a growing population; however the treatment utilization patterns of this population have been vastly understudied. METHODS: HL-VWE were identified from administrative databases during fiscal year 2019. Variables compared between Hispanic and non-Hispanic VWEs included demographics, rurality, service era, utilization of clinical services/investigations, and service-connected injury. Chi-square and Student's t tests were used for comparisons. RESULTS: Among 56 556 VWEs, 3247 (5.7%) were HL. HL-VWEs were younger (59.2 vs 63.2 years; p < .01) and more commonly urban-dwelling (81.6% vs 63.2%, p < .01) compared to non-HL-VWEs. They were also more likely to have served in recent missions such as the Persian Gulf War and post- 9/11 wars (p < .01). HL-VWEs had a higher utilization of all neurology services examined including neurology clinic visits, computed tomography (CT) scans, magnetic resonance imaging (MRI) scans, electroencephalography (EEG), epilepsy monitoring, and comprehensive epilepsy care (p < .01 for all). HL-VWEs were more likely to visit an emergency room or have seizure-related hospitalizations (p < .01). HL-VWEs were more likely to have a service-connected disability greater or equal to 50% (p < .01). SIGNIFICANCE: This study is one of the largest cohorts examining HL-VWEs. We found higher utilization of services in neurology, epilepsy, and neuroimaging by HL-VWEs. HL-VWE are younger, more commonly urban-dwelling, and more likely to have served during recent combat periods and have higher amounts of service-connected disability. Given that the proportion of Hispanic veterans is projected to rise over time, more research is needed to provide the best interventions and mitigate the long-term impact of epilepsy on this diverse patient group.
Subject(s)
Epilepsy , Hispanic or Latino , Patient Acceptance of Health Care , Veterans , Humans , Epilepsy/therapy , Epilepsy/epidemiology , Epilepsy/ethnology , Middle Aged , Male , Female , Veterans/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data , Patient Acceptance of Health Care/ethnology , Hispanic or Latino/statistics & numerical data , Aged , United States/epidemiology , AdultABSTRACT
Biomedicine controls seizures for many children with epilepsy - but not all. In such cases, parents struggle in the wake of various structural, cultural, and corporeal ruptures. Continued use of ineffective medications can lead, iatrogenically, to frightening and serious symptoms and debilitations whose effects, along with those of uncontrolled seizures, ripple outward in challenging ways. Using data from 25 Californian (US) parents who favored providing cannabis to their ill children to meet the iatrogenic burdens of biomedical epilepsy treatments in 2015, well before cannabis's present destigmatization, this paper explores parental refiguration of the effects of clinical iatrogenesis as inevitable - and as productive of evidence necessary to finding better options. In attending to the generative dimensions of iatrogenesis, this paper strives to help clarify the dilemma for parents who critique biomedicine's isolating, materialist, and sometimes apparently haphazard approach to their children, but depend on biomedical and associated systems for their family's well-being nonetheless. Along the way, this paper underscores raced and gendered dimensions of their experiences. Rather than rejecting biomedicine, most hung on tightly, blaming the uncontrolled seizures and their aftermath on a lag in 'the science' and pointing to the cultural idea that every child is unique in explaining their own children's non-responsiveness to treatment thus far. Likewise, they worked to determine effective cannabis regimens with scientised rigour. However, in the end - and in keeping with a culture of (male) Whiteness - stigmatisation, fatigue from chronic care provision, faith in science, and a need for a biomedically-mediated form of social belonging underwrote a majority desire for cannabis's incorporation into the official biomedical pharmacopeia.
Subject(s)
Epilepsy , Medical Marijuana/therapeutic use , Adolescent , Adult , Anthropology, Medical , Child , Child, Preschool , Complementary Therapies , Epilepsy/ethnology , Epilepsy/therapy , Female , Humans , Iatrogenic Disease , Male , Middle Aged , ParentsABSTRACT
BACKGROUND: Mitochondrial encephalomyopathy caused by bi-allelic deleterious variants in TARS2 is rare. To date, only two pedigrees were reported in the literature and the connection between the gene and disease needs further study. CASE PRESENTATION: We report one infant who presented with limb hypertonia, epilepsy, developmental delay, and increased serum lactate from a non-consanguineous Chinese family. Whole-genome sequencing was performed to help to underlie the cause. We identified compound heterozygous variants c.470C > G, p.Thr157Arg and c.2143G > A, p.Glu715Lys in TARS2 and the variants were confirmed by Sanger sequencing. The patient was diagnosed with combined oxidative phosphorylation deficiency 21 according to the Online Mendelian Inheritance in Man (OMIM) database based on the clinical data and the deleterious effect of the two variants in TARS2 predicted by in silico tools. CONCLUSIONS: We presented one case diagnosed with combined oxidative phosphorylation deficiency 21 based on clinical characteristics and genetic analysis. This is the first case in China and the fourth case in the world based on our document retrieval. This study facilitates the understanding of combined oxidative phosphorylation deficiency disease and demonstrates that the next-generation sequencing has a high potential to study inherited disease with high phenotypic heterogeneity and genetic heterogeneity including mitochondrial diseases such as combined oxidative phosphorylation deficiency.
Subject(s)
Developmental Disabilities/genetics , Epilepsy/genetics , Mitochondrial Diseases/genetics , Mitochondrial Encephalomyopathies/genetics , Mutation , Threonine-tRNA Ligase/genetics , Asian People , Developmental Disabilities/diagnosis , Developmental Disabilities/ethnology , Developmental Disabilities/pathology , Epilepsy/diagnosis , Epilepsy/ethnology , Epilepsy/pathology , Family , Gene Expression , Heterozygote , High-Throughput Nucleotide Sequencing , Humans , Infant , Lactic Acid/blood , Male , Mitochondrial Diseases/diagnosis , Mitochondrial Diseases/ethnology , Mitochondrial Diseases/pathology , Mitochondrial Encephalomyopathies/diagnosis , Mitochondrial Encephalomyopathies/ethnology , Mitochondrial Encephalomyopathies/pathology , Pedigree , Threonine-tRNA Ligase/deficiencyABSTRACT
Epilepsy is one of the most prevalent serious neurological diseases. It is unique, being the only severe and disabling neurological disease that is fully treatable in the majority of cases, but on the other hand, associated with stigma, prejudice and discriminatory practices, which negatively impact people's everyday life in important areas, such as access to education, employment, marriage and social integration. For centuries, people with epilepsy (PWE) were stigmatized in all societies, with the consequences of prejudice and discrimination adding to the medical burden of the disease. Myths and misconceptions about this disease still occur, mostly in low-resources settings, however, in many industrialized countries, the knowledge regarding epilepsy is still limited in the population. The stigma is perceived as a negative attribute that is undesirable for the community to which the individual belongs. PWE are intrinsically undervalued, both by themselves ("felt stigma") and by the others. Actual discrimination by peers and institutions generates what is referred to as "enacted stigma". Misconceptions, stigma and negative attitudes towards PWE dramatically decrease quality of life, affecting the most sensitive areas, such as marriage, employment and driving. The Resolution 68.28 of the World Health Assembly (2015), the WHO-ILAE-IBE Global Report "Epilepsy: a public health imperative", advocates for strengthening and implementing national policies and legislation to promote and protect the rights of PWE, reducing misconceptions about epilepsy and improving access to care. Consolidated efforts are required from different organizations, public health managers, healthcare providers, PWE and their families to work together to improve socialization and quality of life of PWE. Educational programs and awareness to support activities among the general population, health service providers and PWE are the best way to reduce all types of stigma and discrimination.
Subject(s)
Disabled Persons , Epilepsy , Health Knowledge, Attitudes, Practice , Quality of Life , Social Stigma , Disabled Persons/legislation & jurisprudence , Epilepsy/diagnosis , Epilepsy/ethnology , Epilepsy/therapy , Health Knowledge, Attitudes, Practice/ethnology , Humans , Quality of Life/psychologyABSTRACT
BACKGROUND: Interindividual variations in the efficacy of antiseizure medications make epilepsy treatment challenging. This is due to genetic factors such as gene polymorphisms in Adenosine-triphosphate (ATP)-binding cassette sub-family B member 1 (ABCB1). In this article, the impact of polymorphisms in the P-glycoprotein-encoding gene, ABCB1 (C1236T, G2677T/A, and C3435T), on levetiracetam disposition was evaluated in Uygur Chinese children with epilepsy. METHODS: MDR1 C3435T polymorphism was analyzed by polymerase chain reaction-fluorescence staining in situ hybridization. The χ test and Fisher exact test were used to analyze the allelic and genotypic distribution of ABCB1, C1236T, G2677T, and C3435T between the drug-resistant and drug-responsive groups. Differences in steady-state and dose-corrected levetiracetam serum concentrations between the different genotypes were analyzed using 1-way analysis of variance and Mann-Whitney test. RESULTS: Total 245 Uygur children with epilepsy were analyzed [drug-resistant, n = 117 (males:females = 53:64) and drug-responsive, n = 128 (males:females = 76:52)]. The frequency of ABCB1 C1236T, G2677T/A, and ABCB1 C3435T genotypes, alleles, haplotypes, or diplotypes did not differ significantly between the 2 groups (P > 0.05). Significantly higher levetiracetam concentrations and serum concentration/body mass dose were seen in ABCB1 2677-GT, TT, GA, and AT genotypes and 3435-TT carriers compared with GG and CC carriers (P = 0.021 and P = 0.002 versus P = 0.001 and P = 0.000, respectively). CONCLUSIONS: ABCB1 G2677T/A and C3435T may affect levetiracetam disposition and therapeutic efficacy in Uygur children with epilepsy. Genetic analysis could be a valuable tool for predicting the response to antiseizure medications before the start of treatment and could contribute to personalized medicine for Uygur children with epilepsy.
Subject(s)
Anticonvulsants/blood , Epilepsy/drug therapy , Levetiracetam/blood , ATP Binding Cassette Transporter, Subfamily B/genetics , Anticonvulsants/therapeutic use , Child , Child, Preschool , China , Epilepsy/ethnology , Female , Gene Frequency , Genotype , Haplotypes , Humans , Levetiracetam/therapeutic use , Male , Polymorphism, Single NucleotideABSTRACT
Epilepsy remains one of the most common neurological diseases in the world but seems to be widely misunderstood, especially in low-income countries. Patients with epilepsy (PWE) can face considerable stigma in society, and there have been various studies that evaluate the knowledge and attitude of the population towards epilepsy. However, there was no study of this kind in Morocco. PURPOSE: Our aim was thus to assess knowledge, attitudes, and traditional practices specifically among relatives and caregivers of PWE in our community, in order to better evaluate their educational needs. METHODS: This cross-sectional and descriptive study was carried out over a year long period in the outpatient neurology clinic of the Mohammed 6 University Hospital, a tertiary referral center in Marrakesh, Morocco. The respondents were relatives of PWE (usually parents and siblings) or spouses who attended the outpatient clinic alongside them. The interviews were carried out by the same investigator at the outpatient clinic during patient's visits, face-to-face using Moroccan Arabic or Darija, with an 18-item questionnaire. RESULTS: Responses of 100 participants were analyzed. The mean age was 40â¯years old and 5â¯months. Sixty-six percent of the respondents were women, 50% of rural origin and 76 % lived in an urban area. Forty-one percent were illiterate, and 74% were of low income. Only 65% of the participants knew the Arabic term for epilepsy. For 48%, epilepsy was linked with witchcraft or demonic possession. Seventy-five percent of the respondents had at least one prior consultation to a traditional healer. Only 5% in our study knew the first-aid basics to apply in case of a seizure. CONCLUSION: Despite having a relative with epilepsy, our participants' knowledge was very poor. The level of education and income seem to be the two major contributing factors. Cultural beliefs and superstition are very pervasive, and the majority of our sample had already used traditional healing and alternative medicine. Our study highlights the need for a more global intervention in Morocco encompassing healthcare policies, awareness campaigns, and educational reforms.
Subject(s)
Epilepsy/ethnology , Epilepsy/psychology , Family Relations/ethnology , Family Relations/psychology , Health Knowledge, Attitudes, Practice , Social Stigma , Adolescent , Adult , Caregivers/psychology , Cross-Sectional Studies , Educational Status , Epilepsy/therapy , Female , Humans , Male , Middle Aged , Morocco/ethnology , Poverty/psychology , Rural Population , Superstitions/psychology , Surveys and Questionnaires , Witchcraft/psychology , Young AdultABSTRACT
Ramadan is a regularly recurring period of fasting that takes place in the ninth month of the Islamic calendar. For this period, adult Muslims refrain from eating and drinking between dawn and sunset. The variation in summer daylight hours means that at temperate latitudes, fasting can last up to 20â¯h. It is already recognized that epilepsy control can deteriorate during Ramadan, and this may be explained by fasting-related changes to adherence to antiseizure drug regimes. This article provides specific advice to help Muslim patients prepare for Ramadan and reduce chances of exacerbation in epilepsy. In addition to advice around sleep hygiene, it explores the use of drugs or preparations of drugs that will demonstrate reduced variation during periods of fasting.
Subject(s)
Epilepsy/psychology , Epilepsy/therapy , Fasting/physiology , Fasting/psychology , Islam/psychology , Adult , Anticonvulsants/therapeutic use , Disease Management , Epilepsy/ethnology , Health Personnel/psychology , HumansABSTRACT
BACKGROUND: Epilepsy stigma is an important issue affecting people with epilepsy (PWE) in various social aspects of life. Most studies on stigma were among the metropolitan population but rarely on indigenous people. Hence, this study aimed to understand the attitudes toward epilepsy of the East Malaysians, comparing with the West Malaysians previously reported. METHOD: This study was performed among the indigenous people in Kuching and Sibu (Sarawak) and Kota Kinabalu (Sabah) using the Public Attitudes Toward Epilepsy (PATE) scale. A higher score indicates poorer attitude. RESULT: A total of 360 respondents (41.7% Kadazan-Dusun, 30.6% Bidayuh, and 24.7% Iban) aged 34.6⯱â¯12.6â¯years completed the questionnaire. They were predominantly females and had lower education level and income compared with the West Malaysians. The Sabah population had significantly lower mean scores (better attitudes) than those in Sarawak, in both personal and general domains (pâ¯<â¯.001). As compared with West Malaysia, the mean score in the personal domain was significantly lower in Sabah, while Sarawak had significantly higher scores in general domain (pâ¯<â¯.001). Subanalysis showed that the Sabah population had better attitudes toward marriage and employment in PWE than the West Malaysians, whereas Sarawak had poorer attitudes toward education and social contact in PWE. CONCLUSION: The attitudes toward epilepsy were different among the indigenous populations in Sabah and Sarawak, and from the West Malaysians, which could be attributable to their sociocultural differences.
Subject(s)
Epilepsy/ethnology , Health Knowledge, Attitudes, Practice , Population Groups/ethnology , Public Opinion , Social Stigma , Adolescent , Adult , Epilepsy/psychology , Female , Humans , Malaysia/ethnology , Male , Middle Aged , Population Groups/psychology , Surveys and Questionnaires , Young AdultABSTRACT
OBJECTIVE: This study was conducted to assess the degree of agreement of Palestinian nursing students with recommendations and key messages to eliminate/reduce epilepsy stigma and change perception of the general public about epilepsy and people with epilepsy (PWE). METHODS: A cross-sectional observational study was conducted among undergraduate nursing students. The study tool was a questionnaire with 24 items which collected the sociodemographic and academic characteristics of the participants (6 items) and agreements with 18 recommendations and key messages to eliminate/reduce epilepsy stigma. RESULTS: A total of 342 nursing students completed the questionnaire with a response rate of 68.4%. The participants agreed with the 6 recommendations to inform media, improve awareness, and educate the general public on epilepsy (agreement rates: 87.7% to 92.4%), 4 recommendations to coordinate efforts to improve awareness and educate the general public on epilepsy and PWE (agreement rates: 89.8% to 93.0%), and 8 key messages to eliminate/reduce epilepsy stigma (agreement rates: 70.2% to 93.9%). In general, female students tended to express significantly higher levels of agreement with the recommendations and key messages (p-valueâ¯<â¯0.05). CONCLUSION: Results of the present study highlighted the importance of involving nurses and future nurses in eliminating/reducing epilepsy stigma and changing perception of the general public about epilepsy and PWE. Further studies are to be conducted to investigate if these recommendations and messages can eliminate or significantly reduce epilepsy stigma and change perception of the general public about epilepsy and PWE.
Subject(s)
Arabs/psychology , Epilepsy/ethnology , Epilepsy/psychology , Perception , Social Stigma , Students, Nursing/psychology , Adult , Cross-Sectional Studies , Education, Nursing, Baccalaureate/methods , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Surveys and Questionnaires/standards , Young AdultABSTRACT
PURPOSE: Children with epilepsy (CWE) are at risk of vitamin D deficiency. Single nucleotide polymorphisms (SNPs) affecting the vitamin D pathway are potentially important risk factors for serum 25-hydroxyvitamin D [25(OH)D] concentration. The aims of our study were to evaluate the association of vitamin d-related SNPs to serum 25(OH)D concentrations in Malaysian CWE. METHODS: Cross-sectional study of Malaysian ambulant CWE on antiseizure medication for >1 year. Sixteen SNPs in 8 genes (GC, VDR, CYP2R1, CYP24A1, CYP27B1, CYP27A1, CYP3A4, NADSYN1/DHCR7) were genotyped. Linear and logistic regression models and co-variates adjusted analyses were used. SNPs with significant associations were further analysed in a group of ethnically-matched healthy Malaysian children. RESULTS: 239 CWE were recruited (52.7% Malay, 24.3% Chinese and 23.0% Indian) with mean serum 25(OH)D of 58.8 nmol/L (SD 25.7). Prevalence of vitamin D deficiency (≤37.5 nmol/L) was 23.0%. Minor allele of GC-rs4588-A was associated with lower serum 25(OH)D in the meta-analysis of both CWE (ß -8.11, P = 0.002) and Malaysian healthy children (ß -5.08, P < 0.001), while VDR-rs7975232-A was significantly associated with reduced odds of vitamin D deficiency in Malay subgroup of CWE (OR: 0.16; 95% CI: 0.06-0.49; P = 0.001) and this association was not found in the healthy children group. CONCLUSIONS: Our results suggest that GC-rs4588 is associated with lower serum 25(OH)D concentration in both Malaysian CWE and healthy children, while VDR-rs7975232A is associated with lower risk of vitamin D deficiency in Malaysian CWE of Malay ethnicity. Our findings may assist in the genetic risk stratification of low vitamin D status among CWE.
Subject(s)
Epilepsy/epidemiology , Epilepsy/genetics , Vitamin D Deficiency/epidemiology , Vitamin D Deficiency/genetics , Vitamin D/analogs & derivatives , Child , Comorbidity , Cross-Sectional Studies , Epilepsy/ethnology , Female , Genetic Association Studies , Humans , Malaysia/epidemiology , Male , Polymorphism, Single Nucleotide , Receptors, Calcitriol/genetics , Vitamin D/blood , Vitamin D Deficiency/ethnology , Vitamin D-Binding Protein/geneticsABSTRACT
PURPOSE: We attempted to identify cultural aspects of epilepsy among the Roma community in Bulgaria by elucidating cultural beliefs, traditional treatments, and potential markers of stigma. METHODS: We established representative discussion groups among five distinct Roma subgroups (Lom, Kalderas, Thracian Tinsmiths (Tinkers), Kyustendil Xoroxane and Kopanari) from different Bulgarian regions. Data about local beliefs and treatment strategies were gathered. RESULTS: Most people were familiar with convulsions but non-convulsive focal seizures were seen not as epileptic but mainly as a "mental problem". Beliefs about putative etiologies for epilepsy were not uniform as some considered environmental and external factors such as high environmental temperatures, electric shocks, loud music, and fever as causes of seizures while others listed bad experiences, stress, trauma, and fear as possible causes. Epilepsy was seen by some as a divine punishment or resulting from black magic. Most considered epilepsy shameful and an obstacle to children attending school. Despite local differences, there was a uniform belief that epilepsy is incurable by Western medicine and people usually resort to traditional healers. A variety of rituals performed by local healers to treat epilepsy were described. DISCUSSION: Misconceptions about epilepsy may contribute to stigmatization in this population; this may in turn contribute to a high treatment gap in this group. As a result, the majority of Roma children with epilepsy are likely to leave school early, are greatly limited in their choice of spouse (particularly girls), and marriages often occur between people with epilepsy or those with a family history of epilepsy.
Subject(s)
Epilepsy/ethnology , Epilepsy/psychology , Medicine, Traditional/psychology , Roma/ethnology , Roma/psychology , Social Stigma , Bulgaria/ethnology , Child , Epilepsy/therapy , Female , Humans , Male , Perception/physiology , StereotypingABSTRACT
OBJECTIVES: Physicians and complementary alternative medicine (CAM) specialists are not formally educated/trained on the benefits of exercises for people living with epilepsy (PWE). This study was performed to develop a consensus-based knowledge items on the benefits of exercises for PWE that physicians and CAM specialists need to know. METHODS: Knowledge items were collected after an extensive review of the scientific literature and from in-depth interviews with key contacts in the domain (6 primary healthcare providers, 4 neurologists, 4 exercise and medicine specialists, 4 CAM practitioners, 4 researchers who did studies on the benefits of exercise for PWE, and 4 PWE). Items collected were reviewed by 12 researchers who did studies on exercise for PWE. A Delphi technique was followed among a panel of 50 members to develop the consensus-based core list. RESULTS: The final consensus-based core list contained 64 items that were grouped into the following categories: 1) general items recommending exercise for PWE, 2) benefits of exercise on prevention of seizures, 3) benefits of exercise on antiepileptic therapy, 4) benefits of exercise in preventing comorbidities associated with epilepsy, 5) benefits of exercise in improving quality of life of PWE, and 6) psychosocial benefits of exercise for PWE. CONCLUSION: This consensus-based core list might guide educators, trainers, or authorities while designing educational or training courses to increase knowledge of physicians in primary healthcare and CAM specialists with regard to the benefits of exercise for PWE. Further investigations are needed to determine if such consensus-based core list might improve care and wellbeing of PWE.
Subject(s)
Arabs/psychology , Epilepsy/ethnology , Epilepsy/psychology , Exercise/psychology , Health Knowledge, Attitudes, Practice , Qualitative Research , Adult , Anticonvulsants/therapeutic use , Consensus , Delphi Technique , Epilepsy/therapy , Exercise/physiology , Exercise Therapy/methods , Exercise Therapy/psychology , Female , Humans , Male , Middle Aged , Quality of Life/psychologyABSTRACT
OBJECTIVE: This study aimed to assess the community knowledge, awareness, and attitude towards people living with epilepsy (PLWE) in Lagos, Nigeria. This was to provide background information for formulating evidence-based campaign and intervention to reduce stigma and improve health-related quality of life amongst PLWE and their families. METHODS: Adult respondents (nâ¯=â¯1614) selected via multistage probability sampling completed a set of questionnaires. A case vignette was used to depict epilepsy. The respondents' knowledge of, familiarity with, perceived cause, and preferred treatment option for epilepsy were assessed. Their attitude towards people's attitude was measured with Attitudes and Beliefs about Living with Epilepsy (ABLE) scale. RESULTS: While a total of 1258 (67.6%) could correctly name the illness as epilepsy, only 945 (58.5%) had witnessed an epileptic seizure episode before. The most endorsed causes of epilepsy were brain injury/infection (75.8%), evil spirit/witchcraft (73.0%), God's will (70.0%), and infection by contact (64.9%). Only 67.6% believe that epilepsy is treatable, and 42.5% preferred treatment by spiritualist. Generally, there was a positive attitude to PLWE; however, there were serious risk and safety concerns. The factors associated with negative attitude towards PLWE include male gender (adjusted odds ratio [AOR]: 2.44, 95% confidence interval [CI]: 1.98-3.00), lower educational status (AOR: 1.69, 95% CI: 1.32-2.16), poor knowledge of epilepsy (AOR: 1.74, 95% CI: 1.36-2.22), poor familiarity with epilepsy (AOR: 1.65, 95% CI: 1.14-2.42), and endorsement of supernatural causes of epilepsy (AOR: 1.59, 95% CI: 1.28-1.97). SIGNIFICANCE: Closing the treatment gap for epilepsy in Nigeria and other sub-Saharan Africa countries will involve steps to change the misconception of the Nigerian populace as regards the causes of epilepsy and help seeking pathway. There is need for nationwide educational programs for epilepsy that consider cognitive and affective processes and also involve all the major stakeholders like primary care workers, community leaders, and spiritual and traditional leaders.
Subject(s)
Epilepsy/ethnology , Epilepsy/psychology , Health Knowledge, Attitudes, Practice , Perception , Social Stigma , Surveys and Questionnaires , Adolescent , Adult , Educational Status , Female , Humans , Male , Middle Aged , Nigeria , Perception/physiology , Quality of Life/psychology , Witchcraft/psychology , Young AdultABSTRACT
OBJECTIVE: The objective of the study was to investigate the predictive seizure lateralization ability of the Neuropsychological Screening Battery for Hispanics (NeSBHIS) in an optimally, demographically matched cohort of primarily immigrant Spanish-speaking people with epilepsy (PWE) living in the US. Linguistically and culturally appropriate neuropsychological measures for Spanish-speaking people are increasingly needed in the US, especially as this diverse, international population grows. The NeSBHIS was developed to meet this need. Previous studies were inconclusive regarding its utility in epilepsy lateralization with PWE. Sample size and demographic variables, particularly educational levels, which anchor neuropsychological normative data and guide clinical use, limited the conclusions of earlier studies. METHODS: A retrospective study, the NeSBHIS battery's ability to predict seizure lateralization in a large cohort of Spanish-speaking PWE (nâ¯=â¯108) was conducted using normative data based on refined, smaller education ranges suggested by the author of the NeSBHIS, Pontón. RESULTS: Regression analysis revealed that four NeSBHIS subtests representing different cognitive domains produced the best model for predicting lateralization: 1) language, 2) attention/mental control, 3) visual memory recall, and 4) verbal memory recall. Prediction accuracy overall was 62% (67.3% for left hemisphere (LH) and 55.8% for right hemisphere (RH)). CONCLUSION: This study demonstrated the clinical utility of the NeSBHIS in seizure lateralization in a large cohort of Spanish-speaking PWE by analyzing standardized scores based on refined, education-based normative samples. These results also highlight that demographic variables, in particular, education, which varies greatly across Spanish-speaking nations in terms of compulsory educational opportunity and quality, must be accounted for more carefully in clinical and research practice.
Subject(s)
Epilepsy/ethnology , Epilepsy/psychology , Hispanic or Latino/psychology , Multilingualism , Neuropsychological Tests/standards , Seizures/ethnology , Seizures/psychology , Adolescent , Adult , Electroencephalography/methods , Female , Humans , Male , Patient Education as Topic/methods , Patient Education as Topic/standards , Retrospective Studies , United States/ethnology , Young AdultABSTRACT
Epilepsy is the most common neurological disorder encountered in primary care in Southeast Asia. People with epilepsy require long-term therapy management. Nonadherence to antiepileptic drugs (AEDs) has been identified as a major factor in suboptimal control of epilepsy. Pharmacies offer patients a first-line point of contact with the healthcare system. Many pharmacies operate with limited or nonqualified human resources that can lead to insufficient knowledge, inappropriate supply of medicines, and insufficient counseling. OBJECTIVE: The aim of this study was to evaluate the qualification and knowledge concerning epilepsy and AEDs among pharmacy-dispensing workers who sell drugs to people with epilepsy. METHOD: A cross-sectional qualitative study was conducted in public and private pharmacies, in both urban and rural areas of Cambodia and Lao People's Democratic Republic (Lao PDR). The knowledge was collected through a questionnaire. RESULTS: A total of 180 respondents from 123 outlets in the two countries were included in this study. A proportion of 40.8% (31) of respondents in Cambodia and 38.5% (40) in Lao PDR were pharmacists, followed by sellers who did not received any healthcare training with a proportion of 18.4% (14) in Cambodia compared to 20.2% (21) in Lao PDR. Head trauma was cited as the main cause of epilepsy by 72.4% (55) in Cambodia and 27.2% (28) in Lao PDR (pâ¯<â¯0.001). Epilepsy was considered as a contagious disease by 6.6% (5) of respondents in Cambodia compared to 18.4% (19) in Lao PDR (pâ¯=â¯0.03). Eighty-seven percent (66) of respondents in Cambodia knew at least one long-term AED versus 67.3% (70) in Lao PDR (pâ¯=â¯0.003). Phenobarbital was mentioned in more than 90.0% of cases in both countries. In overall, 15.4% (21) thought that if seizures are controlled for some months, people with epilepsy could stop taking their AEDs. Only one respondent from Lao PDR was aware of drug-drug interaction between AEDs and oral contraception. CONCLUSION: An educational intervention should be implemented to improve the knowledge of epilepsy and AEDs for pharmacy-dispensing workers. This could include advice for all pharmacy-dispensing workers in order to improve AED management and follow-up of therapeutic adherence.
Subject(s)
Anticonvulsants/therapeutic use , Epilepsy/drug therapy , Epilepsy/ethnology , Health Knowledge, Attitudes, Practice , Pharmacies/standards , Adult , Cambodia/ethnology , Cross-Sectional Studies , Epilepsy/psychology , Female , Humans , Laos/ethnology , Male , Middle Aged , Pharmacists/psychology , Pharmacists/standards , Pharmacy Technicians/psychology , Pharmacy Technicians/standards , Surveys and Questionnaires/standardsABSTRACT
INTRODUCTION: Epilepsy stigma has been associated with poor quality of life among people with epilepsy (PWE). It is important to understand the variation and degree of epilepsy stigma in one of the most populous and culturally diverse nations in the world, Indonesia. Hence, this study aimed to test the validity and reliability of the Indonesian version of the Public Attitudes Toward Epilepsy (PATE) scale. METHOD: The translation was performed according to standard principles and tested in 200 native Indonesian speakers who were aged above 18-year-old for psychometric validation. RESULTS: The items in each domain had similar means and standard deviations (equal item variance), means ranging from 2.17 to 2.86 in general domain and 2.75 to 3.56 in personal domain and, standard deviations ranging from 0.87 to 1.05 and 0.88 to 1.01 in general and personal domain, respectively. Item-domain correlations were more than 0.5 for all items, and they correlate higher within their own domain compare with the other domain (convergent and divergent validity). Multitrait analysis showed similar variance, floor, and ceiling patterns to a great extent compared with the initial study. The Indonesian PATE scale also showed mostly similar correlation with demographic characteristics except monthly income. Principle axis analysis revealed strong factor loading (>0.3) in their hypothesized domain, except item 14. The Cronbach's α values for general and personal domains were 0.836 and 0.765, which were within the accepted range of 0.7 to 0.9. CONCLUSION: The Indonesian PATE scale is a validated and reliable translation for measuring public attitudes toward epilepsy.
Subject(s)
Epilepsy/ethnology , Health Knowledge, Attitudes, Practice , Psychometrics/standards , Public Opinion , Surveys and Questionnaires/standards , Translating , Adolescent , Adult , Cross-Cultural Comparison , Epilepsy/psychology , Female , Humans , Indonesia/ethnology , Male , Middle Aged , Psychometrics/methods , Quality of Life/psychology , Reproducibility of Results , Social Stigma , Young AdultABSTRACT
OBJECTIVE: The objective of this study was to compare Spanish-speaking American patients with epilepsy to Spanish-speaking American patients with psychogenic nonepileptic seizures (PNES) on depression, anxiety, and other clinical variables. BACKGROUND: Research on Spanish-speaking American patients with epilepsy or PNES is relatively infrequent, with only a few studies on psychopathology in these two patient groups. Studies of English-speaking patients indicate that those with PNES present with greater depression and anxiety and report poorer quality of life (QOL) when compared with persons with epilepsy (PWEs). Similarly, although psychological trauma is observed in both groups, those with PNES appear to have more traumatic exposure compared with PWEs. METHODS: This is a retrospective study of 74 Spanish-speaking PWEs (49 women, 31 men) and 34 Spanish-speaking patients with PNES (28 women, 4 men) (2004 to 2017). The diagnosis of epilepsy or PNES was confirmed with video-EEG. Demographic and clinical (psychological trauma, history of psychological treatment, etc.) data were collected, and Spanish versions of the Beck Depression Inventory - second edition (BDI-II) and Beck Anxiety Inventory (BAI) were completed by the patients. RESULTS: Patients with PWEs (Mâ¯=â¯18.19, SDâ¯=â¯12.89) differed significantly from those with PNES on a measure of depression (BDI-II, (Mâ¯=â¯24.12, SDâ¯=â¯11.20); t (92)â¯=â¯-2.22, pâ¯=â¯0.01). In addition, PWEs (Mâ¯=â¯15.76, SDâ¯=â¯14.24) also differed significantly when compared with patients with PNES on a measure of anxiety (BAI, (Mâ¯=â¯22.46, SDâ¯=â¯14.02); t (93)â¯=â¯-2.05, pâ¯=â¯0.02). Significant differences in clinical and demographic data were also noted. CONCLUSIONS: Spanish-speaking American patients with PNES were significantly more depressed and anxious and reported greater exposure to sexual trauma as compared with PWEs. Furthermore, patients with PNES tended to report more prediagnosis utilization of mental health services than PWEs. After adjusting for potential linear effects of other predictors (e.g., gender, age, seizure frequency, and psychological trauma), only a reported history of psychological trauma had a linear relationship with a depression score while higher seizure frequency and history of mental health treatment had linear relationships with an anxiety score.
Subject(s)
Anxiety/psychology , Depression/psychology , Epilepsy/psychology , Hispanic or Latino/psychology , Psychophysiologic Disorders/psychology , Seizures/psychology , Adult , Aged , Anxiety/ethnology , Depression/ethnology , Epilepsy/ethnology , Female , Humans , Male , Middle Aged , Psychophysiologic Disorders/ethnology , Quality of Life/psychology , Retrospective Studies , Seizures/ethnology , United States/epidemiologyABSTRACT
Peri-urban Senegal lies outside the influence of both the nation's historic public mental health model and contemporary global mental health. This paper examines how cultural logics in this underserved region spill over from social domains to widen the therapeutic sphere of psychoses and epilepsy. Observations and 60 carer and/or patient interviews concerning 36 patients afflicted by one or both conditions illustrate how the "crisis of the uncanny", a spectacular eruption of psychoses and seizures into the everyday, triggers trajectories across these domains. To resolve the crisis, patients and carers mobilize debts and obligations of extended kin and community, as well as a gift economy among strangers. The therapeutic and non-therapeutic are further linked through the semantics of falling, which associates this local term for the crisis with divine ecstasy and the slide from human to non-human forms of life. We introduce the concept of thick therapeutics to capture how the logics of sheep- other animal-human relationality, secular-divine politics of giving, and payment/sacrifice for healing imbue a therapeutic assemblage continually constructed through actions of patients, carers and healers. We ask what implications therapeutic thickening might have for mental health futures, such as monetized payment under global mental health.
Subject(s)
Epilepsy/therapy , Health Services , Psychotic Disorders/therapy , Adult , Epilepsy/ethnology , Humans , Psychotic Disorders/ethnology , Qualitative Research , Senegal/ethnologyABSTRACT
PURPOSE: Individuals with type 1 diabetes mellitus (T1D) are at higher risk of epilepsy. T1D is a progressive immune-mediated disease and the etiology of epilepsy remains unknown in most. Glutamic acid decarboxylase (GAD) catalyzes GABA formation. GABA-secreting neurons and pancreatic beta cells are the major cells expressing GAD. METHODS: Cross-sectional study. Patients with T1D from a multiethnic population underwent GADA measurement to investigate possible association between T1D and epilepsy of unknown etiology. RESULTS: T1D patients were analyzed (nâ¯=â¯375). Overall frequency of epilepsy was 5.9% (nâ¯=â¯22). Frequency of epilepsy of unknown etiology was 3.2% (nâ¯=â¯12). Of these, 8 (2.1%) had idiopathic generalized epilepsy (IGE) and 4 (1.1%) MRI-negative temporal lobe epilepsy (TLE). Patients with T1D and epilepsy of unknown etiology did not show differences in GADA frequency (83.3% vs 50%; pâ¯=â¯0.076); however, their titers were higher (106.9⯱â¯136.5 IU/mL; median 7; IQR 1.65-256 vs 10.2⯱â¯14.5 IU/ml; median 4.3; IQR 1.9-8.9; pâ¯=â¯0.019) compared to patients without epilepsy. Moreover, epilepsy of unknown etiology was associated with GADA titers ≥ 100 UI/mL [odds ratio (OR) 4.42, 95% CI 2.36-8.66]. CONCLUSION: Epilepsy frequency was elevated in patients with T1D and multiethnic background. Presence of epilepsy of unknown etiology was associated with high titers of GADA in this population with long-standing T1D, which has different ethnic and genetic background compared to previous studies. Further prospective studies are required to identify if GADA presence or its persistence are directly responsible for epilepsy in individuals with T1D.