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1.
Epilepsy Behav ; 155: 109778, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38636139

RESUMEN

INTRODUCTION: Depression and anxiety are prevalent in epilepsy patients, but psychiatric or psychological services may not be accessible to all patients. This study aimed to determine the effectiveness of the 20-minute mindful breathing on the psychological well-being of PWE using an instructional video. METHOD: This was a pilot, assessor-blinded, randomized controlled trial. The intervention group received a guided video and was briefed to perform the exercise twice a week for two weeks while the waitlist control group only received the video upon completion of the study. The subjects were assessed at three-time points (T0: Baseline, T1: 2 weeks after the intervention, T2: 4 weeks after intervention), using the Neurological Disorders Depression Index (NDDI-E), General Anxiety Disorder (GAD-7), Quality of Life in Epilepsy Inventory (QOLIE-31) and Mindfulness Attention Awareness Scale (MAAS). RESULTS: Twenty patients were recruited, with 10 in the intervention and waitlist-control groups. Compared with the waitlist-control group, participants in the intervention group showed significant improvement in NDDI-E at T1 (p = 0.022) but not at T2 (p = 0.056) and greater improvement in GAD-7 at T1 and T2 but not statistically significant. The QOLIE-31 overall score in the intervention group has significantly improved at T1 (p = 0.036) and T2 (p = 0.031) compared to the waitlist-control group. For MAAS, the intervention group also had an increased score at T2 (p = 0.025). CONCLUSION: The 20-minute mindfulness breathing exercise has an immediate effect in improving depression and quality of life among people with epilepsy.


Asunto(s)
Ejercicios Respiratorios , Epilepsia , Atención Plena , Calidad de Vida , Humanos , Masculino , Femenino , Proyectos Piloto , Adulto , Epilepsia/psicología , Epilepsia/terapia , Atención Plena/métodos , Calidad de Vida/psicología , Ejercicios Respiratorios/métodos , Persona de Mediana Edad , Depresión/terapia , Depresión/psicología , Resultado del Tratamiento , Adulto Joven , Ansiedad/terapia , Ansiedad/psicología , Ansiedad/etiología , Escalas de Valoración Psiquiátrica , Bienestar Psicológico
2.
Epilepsia ; 64(8): 2116-2125, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37243851

RESUMEN

OBJECTIVE: One of the objectives of the Intersectoral Global Action Plan on epilepsy and other neurological disorders for 2022 to 2031 is to ensure at least 80% of people with epilepsy (PWE) will have access to appropriate, affordable, and safe antiseizure medications (ASMs) by 2031. However, ASM affordability is a significant issue in low- and middle-income countries, preventing PWE from accessing optimal treatment. This study aimed to determine the affordability of the newer (second and third generation) ASMs in resource-limited countries in Asia. METHODS: We conducted a cross-sectional survey by contacting country representatives in lower-middle-income countries (LMICs) in Asia, including Indonesia, Lao People's Democratic Republic (PDR), Myanmar, Philippines, Vietnam, India, Bangladesh, and Pakistan, and the upper-middle-income country Malaysia, from March 2022 to April 2022. The affordability of each ASM was calculated by dividing the 30-day ASM cost by the daily wage of the lowest paid unskilled laborers. Treatment costing 1 day's wage or less for a 30-day supply of chronic disease is considered affordable. RESULTS: Eight LMICs and one upper-middle-income country were included in this study. Lao PDR had no newer ASM, and Vietnam had only three newer ASMs. The most frequently available ASMs were levetiracetam, topiramate, and lamotrigine, and the least frequently available was lacosamide. The majority of the newer ASMs were unaffordable, with the median number of days' wages for a 30-day supply ranging from 5.6 to 14.8 days. SIGNIFICANCE: All new generation ASMs, whether original or generic brands, were unaffordable in most Asian LMICs.


Asunto(s)
Anticonvulsivantes , Epilepsia , Humanos , Estudios Transversales , Asia , India , Anticonvulsivantes/uso terapéutico , Epilepsia/tratamiento farmacológico , Costos y Análisis de Costo
3.
Br J Clin Pharmacol ; 89(11): 3340-3351, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37294011

RESUMEN

AIMS: Despite the availability of newer antiseizure medications, carbamazepine (CBZ) remains the gold standard. However, patients of Asian ancestry are susceptible to CBZ-related severe cutaneous adverse reactions. Universal HLA-B*15:02 screening is a promising intervention to address this. With the increasing recognition of integrating real-world evidence in economic evaluations, the cost-effectiveness of universal HLA-B*15:02 screening was assessed using available real-world data in Malaysia. METHODS: A hybrid model of a decision tree and Markov model was developed to evaluate 3 strategies for treating newly diagnosed epilepsy among adults: (i) CBZ initiation without HLA-B*15:02 screening (current practice); (ii) universal HLA-B*15:02 screening prior to CBZ initiation; and (iii) alternative prescribing without HLA-B*15:02 screening. The model was populated with real-world inputs derived from the Malaysian population. From a societal perspective, base-case analysis and sensitivity analyses estimated the costs and outcomes over a lifetime. Incremental cost-effectiveness ratios were calculated. RESULTS: In the base-cases analysis, universal HLA-B*15:02 screening yielded the lowest total costs and the highest total quality-adjusted life years (QALYs) gained. Compared with current practice, universal screening was less costly by USD100 and more effective by QALYs increase of 0.1306, while alternative prescribing resulted in 0.1383 QALYs loss at additional costs of USD332. The highest seizure remission rate (56%) was estimated for universal HLA-B*15:02 screening vs. current practice (54%) and alternative prescribing (48%). CONCLUSION: Our study suggests that universal HLA-B*15:02 screening is a cost-effective intervention in Malaysia. With the demonstrated value of real-world evidence in economic evaluations, more relevant standardization efforts should be emphasized to better inform decision-making.


Asunto(s)
Análisis de Costo-Efectividad , Síndrome de Stevens-Johnson , Adulto , Humanos , Benzodiazepinas/uso terapéutico , Carbamazepina/uso terapéutico , Análisis Costo-Beneficio , Antígenos HLA-B/genética , Antígeno HLA-B15/genética , Malasia/epidemiología , Síndrome de Stevens-Johnson/epidemiología
4.
Epilepsy Behav ; 147: 109395, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37619469

RESUMEN

BACKGROUND: Caregivers of adults with epilepsy (AWE) play an important role in the healthcare pathway of AWE and are described as the "co-client." Being caregivers can be stressful and the negative impacts might accumulate over time, affecting their quality of life and well-being. OBJECTIVES: This qualitative study aimed to explore the lived experience of caregivers of AWE in Malaysian families and understand their caregiving challenges. Individual semi-structured interviews were held with 12 primary caregivers of AWE. Interpretative Phenomenological Approach (IPA) was used. The interview transcripts were analyzed using NVivo12 software. RESULTS: Primary caregivers of AWE were parents or siblings, with ages ranging from 56 to 80 years old and years of caregiving from 24 to 40 years. Most AWE (58%) were intellectually disabled and fully dependent on ADL needs. Two categories of themes emerged, including four themes on caregiver burden, i.e., physical, emotional, and social burdens, and challenges in future planning of care, and two themes on coping strategies (problem- or emotional-focused). In future planning of care, most caregivers especially parents carried a burden of responsibility and were reluctant to depend on others or institutional services. CONCLUSION: The caregiving burden among caregivers for adult AWE was not confined to current burdens only but also challenges in future planning. A better understanding of the caregiving burden for AWE and coping strategies is needed to provide tailored psychoeducation or psychosocial intervention to support this population.

5.
Epilepsy Behav ; 148: 109455, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37774547

RESUMEN

OBJECTIVE: People with epilepsy (PWE) have a high prevalence of developing depression and anxiety. The objective is to determine the feasibility of brief screening tools to screen for depression and anxiety in epilepsy, and the predictive factors. METHOD: This is a cross-sectional study in the neurology clinic in a tertiary teaching hospital in Kuala Lumpur. The screening tools used were the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and the General Anxiety Disorder Form (GAD-7). RESULTS: Five hundred and eighty-five patients were recruited in this study, and 50.8% of them were male, predominantly Chinese (46.7%), with a mean age of seizure onset of 21.8 ± 16.1 years. The majority had focal seizures (75.0%), and 41.9% had seizure remission. There were 15.5% who scored ≥15 in the NDDI-E, and 17.0% had moderate or severe anxiety (scored ≥10 in the GAD-7). In a regression model to predict the NDDI-E score, the age of seizure onset recorded a higher beta value (ß = -0.265, p =< 0.001), followed by the duration of epilepsy (ß = -0.213, p =< 0.001), use of levetiracetam (LEV) (ß = 0.147, p = 0.002), clonazepam (CLZ) (ß = 0.127, p = 0.011), and lamotrigine (LTG) (ß = 0.125, p = 0.011), number of current antiseizure medications (ß = -0.124, p = 0.049), seizure remission for ≥1 year (ß = -0.108, p = 0.011), and female (ß = 0.082, p = 0.049). For the GAD-7 score, the predictors included current age (ß = -0.152, p = 0.001), the use of LEV (ß = 0.122, p = 0.011), Indian ethnicity (ß = 0.114, p = 0.006), and the use of carbamazepine (ß = -0.090, p = 0.043). CONCLUSION: Implementation of simple psychological screening using self-administered questionnaires was feasible in a busy tertiary epilepsy clinic.


Asunto(s)
Epilepsia , Humanos , Masculino , Femenino , Preescolar , Niño , Adolescente , Adulto Joven , Adulto , Estudios Transversales , Estudios de Factibilidad , Epilepsia/complicaciones , Epilepsia/diagnóstico , Epilepsia/tratamiento farmacológico , Anticonvulsivantes/uso terapéutico , Levetiracetam/uso terapéutico , Depresión/diagnóstico , Depresión/etiología , Depresión/epidemiología , Convulsiones/tratamiento farmacológico
6.
Epilepsia ; 63(4): 936-949, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35170024

RESUMEN

OBJECTIVE: Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe cutaneous adverse drug reactions. Antiseizure medications (ASMs) with aromatic ring structure, including carbamazepine, are among the most common culprits. Screening for human leukocyte antigen (HLA) allele HLA-B*15:02 is recommended prior to initiating treatment with carbamazepine in Asians, but this allele has low positive predictive value. METHODS: We performed whole genome sequencing and analyzed 6 199 696 common variants among 113 aromatic ASM-induced SJS/TEN cases and 84 tolerant controls of Han Chinese ethnicity. RESULTS: In the primary analysis, nine variants reached genome-wide significance (p < 5e-08), one in the carbamazepine subanalysis (85 cases vs. 77 controls) and a further eight identified in HLA-B*15:02-negative subanalysis (35 cases and 53 controls). Interaction analysis between each novel variant from the primary analysis found that five increased risk irrespective of HLA-B*15:02 status or zygosity. HLA-B*15:02-positive individuals were found to have reduced risk if they also carried a chromosome 12 variant, chr12.9426934 (heterozygotes: relative risk = .71, p = .001; homozygotes: relative risk = .23, p < .001). All significant variants lie within intronic or intergenic regions with poorly understood functional consequence. In silico functional analysis of suggestive variants (p < 5e-6) identified through the primary and subanalyses (stratified by HLA-B*15:02 status and drug exposure) suggests that genetic variation within regulatory DNA may contribute to risk indirectly by disrupting the regulation of pathology-related genes. The genes implicated were specific either to the primary analysis (CD9), HLA-B*15:02 carriers (DOCK10), noncarriers (ABCA1), carbamazepine exposure (HLA-E), or phenytoin exposure (CD24). SIGNIFICANCE: We identified variants that could explain why some carriers of HLA-B*15:02 tolerate treatment, and why some noncarriers develop ASM-induced SJS/TEN. Additionally, this analysis suggests that the mixing of HLA-B*15:02 carrier status in previous studies might have masked variants contributing to susceptibility, and that inheritance of risk for ASM-induced SJS/TEN is complex, likely involving multiple risk variants.


Asunto(s)
Anticonvulsivantes , Síndrome de Stevens-Johnson , Anticonvulsivantes/efectos adversos , Carbamazepina/efectos adversos , ADN , Predisposición Genética a la Enfermedad/genética , Antígenos HLA-B/genética , Antígeno HLA-B15/genética , Humanos , Factores de Riesgo , Síndrome de Stevens-Johnson/genética
7.
J Neurooncol ; 159(3): 657-664, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-36036318

RESUMEN

PURPOSE: Seizures are a common presenting symptom among patients with low- and high-grade glioma. However, the impact and inter-relationship between the presence of seizures, anti-seizure medication (ASM) and survival are unclear. We retrospectively analyzed the incidence of seizures and identified the pattern and relationship of anti-seizure medication on survival in our cohort of patients with glioma. METHODS: We evaluated all glioma patients who underwent treatment at the University of Malaya Medical Centre (UMMC) between 2008 and 2020. Demographic and clinical data of seizures and pattern of ASM administration in comparison to overall survival were analyzed. RESULTS: A total of 235 patients were studied, with a minimum of one year clinical follow-up post-treatment. The median survival for low-grade glioma was 38 months whereas high-grade glioma was 15 months. One-third of our glioma patients (n = 74) presented with seizures. All patients with seizures and a further 31% of patients without seizures were started on anti-seizure medication preoperatively. Seizure and Levetiracetam (LEV) were significantly associated with OS on univariate analysis. However, only LEV (HR 0.49; 95% CI 0.23-0.87; p=0.02) was significantly associated with improving overall survival (OS) on multivariate analysis. Once ASM was adjusted for relevant factors and each other, LEV was associated with improved survival in all grade gliomas (HR 0.52; 95% CI 0.31-0.88; p=0.02) and specifically high-grade gliomas (HR 0.53; 95% CI 0.30-0.94; p=0.03). CONCLUSIONS: Pre-operative seizures among patients with glioma indicated a better overall prognosis. The administration of ASM, specifically LEV was associated with a  significant survival advantage in our retrospective cohort of patients.


Asunto(s)
Neoplasias Encefálicas , Glioma , Anticonvulsivantes/uso terapéutico , Neoplasias Encefálicas/complicaciones , Neoplasias Encefálicas/tratamiento farmacológico , Glioma/complicaciones , Glioma/tratamiento farmacológico , Humanos , Levetiracetam/uso terapéutico , Estudios Retrospectivos
8.
Br J Clin Pharmacol ; 88(8): 3782-3788, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35318720

RESUMEN

AIMS: Allopurinol is known to cause severe cutaneous adverse drug reactions (SCAR) in Malaysia. However, the incidence of allopurinol-induced SCAR is unknown. Therefore, we aimed to determine the incidence of allopurinol-induced SCAR in Malaysia over 5 years from 2015 to 2019. METHODS: This retrospective analysis was done in collaboration with the National Pharmaceutical Regulatory Agency (NPRA). All allopurinol-induced adverse drug reaction cases reported to NPRA from 2015 to 2019 were extracted. Allopurinol-induced SCAR cases were identified and the incidence over the 5 years was calculated. RESULTS: Incidence of allopurinol-induced SCAR averaged at 2.5 cases per 1000 new users over the 5-year period, with a reducing trend from 3.2 per 1000 new users in 2015 to 2.25 per 1000 in 2019; despite the increasing number of adverse drug reaction cases being reported over the years. Stevens-Johnson syndrome was the commonest form of allopurinol-induced SCAR reported, at 143 cases (46.8% of total SCAR reported). Among Malaysia's 3 main ethnicities, the Chinese had the highest percentages of allopurinol-induced SCAR when compared to the Bumiputera and Indians (3.18 × 10-4 %). CONCLUSION: The estimated incidence of allopurinol-induced SCAR in Malaysia from 2015 to 2019 was 2.5 cases per 1000 new users. This figure is consistent with the incidence reported in other Asian countries, namely Taiwan and Thailand.


Asunto(s)
Alopurinol , Síndrome de Stevens-Johnson , Alopurinol/efectos adversos , Humanos , Incidencia , Malasia/epidemiología , Estudios Retrospectivos , Síndrome de Stevens-Johnson/epidemiología , Síndrome de Stevens-Johnson/etiología , Tailandia
9.
Epilepsy Behav ; 118: 107916, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33743343

RESUMEN

BACKGROUND: We investigated the efficacy of mindfulness-based intervention (MBI) in promoting psychological wellbeing in people with epilepsy (PWE) using an assessor-blinded randomized controlled design. METHODS: A total of 28 PWE were randomly assigned to either intervention (n = 14 cases) or control group (n = 14 controls). The intervention group received a six 2.5-hour weekly MBI, while the control group did not receive any intervention. They were assessed at three timepoints (T0: before intervention, T1: immediately after intervention, and T2: 6 weeks after intervention). Repeated measures of analyses of variance (RM-ANOVAs) were used for inter-group comparisons to determine intervention effect from baseline -to T1 and -to T2 for all outcome measures. The individual changes were calculated using the reliable change index (RCI). Key outcomes included depression (BDI-II), anxiety (BAI), epilepsy-related quality of life (QOLIE-31), satisfaction with life (SWLS), and level of mindfulness (MAAS). RESULTS: Participants who participated in the MBI showed significant reduction in BDI-II (p = 0.001), significant increases in MAAS (p = 0.027) and QOLIE-31 (p = 0.001) at T1 when compared with the control group. However, BAI and SWLS were not significant. The trend was similar at 6-week follow-up, all outcome measures of MBI remained significant (p < 0.05) except for BAI and SWLS. Beyond the 6-week intervention, RCI analysis showed a significant improvement in levels of mindfulness (45.45% vs. 21.43%, p = 0.009), depression (45.45% vs. 0.00%, p = 0.016), quality of life (45.45% vs. 14.29%, p = 0.017) with MBI, as compared to the no-intervention phase. CONCLUSION: Mindfulness-based intervention is effective in reducing psychological distress and improving the quality of life in PWE.


Asunto(s)
Epilepsia , Atención Plena , Distrés Psicológico , Ansiedad/etiología , Ansiedad/terapia , Depresión/etiología , Depresión/terapia , Epilepsia/terapia , Humanos , Calidad de Vida , Estrés Psicológico/etiología , Estrés Psicológico/terapia
10.
Epilepsy Behav ; 122: 108215, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34325157

RESUMEN

BACKGROUND: Telehealth use is limited in developing countries. Therefore, a modified approach with early physical consultation was designed and applied in our hospital. This study aimed to determine the efficacy of this early physical consultation in reducing the clinical and psychological impacts of coronavirus disease-19 (COVID-19), which enabled insight into its global feasibility. METHOD: Participants were contacted and offered early physical consultation with a neurologist. Patients who participated in the Phase 1 study on the impacts of the COVID-19 pandemic on people with epilepsy and treated in our hospital were recruited. Clinical and psychological outcomes of COVID-19 were assessed with the Hospital Anxiety Depression Scale (HADS) and Quality of Life in Epilepsy Inventory (QOLIE-31). RESULT: A total of 312 patients completed this study with a mean age of 39.13 ±â€¯16.13 years, majority female (51.0%), and experienced seizures at least once yearly (64.7%). There was 12.6% who experienced seizure worsening related to the COVID-19 pandemic. After receiving early clinical intervention, 30.8% achieved better seizure control with another 51.1% had no seizure occurrence. The mean HADS anxiety score improved immediately post-intervention (5.27 ±â€¯4.32 vs. 4.79 ±â€¯4.26, p < 0.01), and at 2-week post-intervention (5.58 ±â€¯4.46 vs. 4.73 ±â€¯3.95, p < 0.01). The mean HADS depression score also improved immediately post-intervention (4.12 ±â€¯3.69 vs. 3.84 ±â€¯3.76, p < 0.05) and at 2-week post-intervention (4.38 ±â€¯3.81 vs. 3.73 ±â€¯3.63, p < 0.05). The intervention resulted in significant improvement in energy-fatigue and social function subscales in QOLIE-31 but a reduction in cognitive and medication effects subscales. CONCLUSION: Early physical consultation with stringent precautionary measures is feasible and effective in improving the psychological outcome during COVID-19 pandemic.


Asunto(s)
COVID-19 , Epilepsia , Adulto , Ansiedad/epidemiología , Ansiedad/etiología , Depresión/epidemiología , Depresión/etiología , Epilepsia/epidemiología , Femenino , Humanos , Persona de Mediana Edad , Pandemias , Calidad de Vida , Derivación y Consulta , SARS-CoV-2 , Encuestas y Cuestionarios , Adulto Joven
11.
Epilepsy Behav ; 117: 107849, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33631434

RESUMEN

BACKGROUND: This study aimed to determine the relationship among the clinical, logistic, and psychological impacts of COVID-19 on people with epilepsy (PWE), and the impact of COVID-19 on the quality of life. METHOD: This is a cross-sectional anonymized web-based study on PWE, using an online questionnaire to assess the clinical, logistic, and psychological impacts of COVID-19, including Hospital Anxiety Depression Scale (HADS) and Quality of Life in Epilepsy Inventory (QOLIE-31). RESULT: 461 patients were recruited, with a mean age of 39.21 ±â€¯15.88 years, majority female (50.1%), with focal epilepsy (54.0%), and experienced seizures at least once yearly (62.5%). There were 13.0% experienced seizure worsening during COVID-19 period, which were associated with baseline seizures frequency ≥ 1 per month (32.0% vs. 6.2%, p < 0.001), worries of seizure worsening (18.0% vs. 10.9%, p < 0.001), difficulty to go emergency unit (24.4% vs. 10.4%, p < 0.001), AEDs ran out of stock (23.2% vs. 11.6%, p < 0.05), self-adjustment of AED dosages (26.4% vs. 11.3%, p < 0.001), inadequate sleep (22.4% vs. 9.2%, p < 0.001), and stress (23.4% vs.10.1%, p < 0.01). Participants experiencing seizure worsening reported greater anxiety (8.10 ±â€¯5.011 vs. 4.84 ±â€¯3.989, p < 0.001) and depression (6.05 ±â€¯3.868 vs. 3.86 ±â€¯3.589, p < 0.001). Logistic regression showed baseline seizures frequency >1 per month (OR, 14.10) followed by anxiety (OR, 3.90), inadequate sleep (OR, 0.37), and treated in UMMC (OR, 0.31) as the predictors for seizure worsening during COVID-19 period. Poorer total QOLIE-31 score was noted in those with seizure worsening (48.01 ±â€¯13.040 vs. 62.15 ±â€¯15.222, p < 0.001). Stepwise regression highlighted depression as the main negative predictor for quality of life (ß = -0.372, p < 0.001), followed by anxiety (ß = -0.345, p < 0.001). CONCLUSION: A significant number of PWE experienced seizure worsening during COVID-19 period, which was related to the clinical, logistic, and psychological factors. Quality of life was affected by the seizure worsening and the psychological stress.


Asunto(s)
COVID-19 , Epilepsia , Adulto , Estudios Transversales , Epilepsia/complicaciones , Femenino , Humanos , Persona de Mediana Edad , Calidad de Vida , SARS-CoV-2 , Encuestas y Cuestionarios , Adulto Joven
12.
Epilepsy Behav ; 117: 107798, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33582391

RESUMEN

BACKGROUND: In epilepsy stigma, certain perceptions are culturally dependent and greatly influence a person's attitudes. Hence, we aimed to explore the perceptions associated with attitudes toward epilepsy in various urban subpopulations. METHOD: This is a mixed-method study employing the Public Attitude Toward Epilepsy (PATE) scale as the quantitative measure, followed by a semi-structured interview. The qualitative data were then counted and analyzed concurrently with the quantitative data. RESULT: A total of 410 respondents (104 people with epilepsy [PWE]; 104 family members [FM]; 100 medical students [MS]; 102 public [Pb]) aged 37 years (IQR 23-55) were recruited. They were mostly female (57.3%), Chinese (52.0%), and highly educated (63.7%). The attitudes toward epilepsy among medical students are the best, followed by the PWE and their family members, and the worst among the public. The qualitative results revealed 4 main themes, which were "general social values", "epilepsy severity and control", "PWE's abilities", and "harms and burdens to the respondents and others". A two-dimensional perception model was constructed based on these themes, which consisted of general-personal and universal-specific dimensions. Generally, the PWE/FM subgroup focused more on PWE's abilities, whereas the MS/Pb subgroup more on general social values, and harms and burden. In the education aspect, most attitudes were related to the epilepsy severity and PWE's abilities, whereas in employment, the main consideration was the PWE's abilities. Burden to life and concern about inheritance were major considerations in the marital relationship. Those with positive attitudes tend to highlight the importance of general social values, while negative attitudes associated more with epilepsy severity. In general domain, general social values were the main considering factor but in personal domain, most participants will consider epilepsy severity and control, harms and burden to themselves. CONCLUSION: The perceptions underlying attitudes toward epilepsy were complex and varied between subpopulations, attitude levels, domains, and aspects of life. (304 words).


Asunto(s)
Epilepsia , Opinión Pública , Adulto , Actitud , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Percepción , Estigma Social , Encuestas y Cuestionarios
13.
Epilepsy Behav ; 111: 107245, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32693372

RESUMEN

OBJECTIVE: This study was conducted to test the validity and reliability of the Turkish version of the Public Attitudes Toward Epilepsy (PATE) scale, which aims to understand public perceptions of seizures and epilepsy. METHODS: The scale was translated following the standard procedures. For psychometric validation, the Turkish version of the PATE scale was administered to 201 native Turkish speakers above the age of 18 who had no history of seizures or epilepsy. It was found that the respondents were able to fill out the scale quickly and without difficulty in understanding the translated items on the scale. RESULTS: Cronbach's alpha coefficient was found to be 0.843 for the overall scale and above 0.7 for each individual item. Cronbach's alpha was 0.78 for the general domain and 0.792 for the personal domain. Exploratory and confirmatory factor analyses were carried out and showed that the scale had a structure similar to that of the original scale, with the 14 items grouped under two dimensions, similar to the original scale. CONCLUSION: The Turkish version of the PATE scale was a valid and reliable tool to measure the attitudes toward epilepsy in Turkish society.


Asunto(s)
Epilepsia/epidemiología , Epilepsia/psicología , Conocimientos, Actitudes y Práctica en Salud , Opinión Pública , Encuestas y Cuestionarios/normas , Traducción , Adolescente , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Turquía/epidemiología , Adulto Joven
14.
Epilepsy Behav ; 110: 107158, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32512367

RESUMEN

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€¯12.6 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 (p < .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 (p < .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.


Asunto(s)
Epilepsia/etnología , Conocimientos, Actitudes y Práctica en Salud , Grupos de Población/etnología , Opinión Pública , Estigma Social , Adolescente , Adulto , Epilepsia/psicología , Femenino , Humanos , Malasia/etnología , Masculino , Persona de Mediana Edad , Grupos de Población/psicología , Encuestas y Cuestionarios , Adulto Joven
15.
Epilepsy Behav ; 103(Pt A): 106833, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31839499

RESUMEN

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.


Asunto(s)
Epilepsia/etnología , Conocimientos, Actitudes y Práctica en Salud , Psicometría/normas , Opinión Pública , Encuestas y Cuestionarios/normas , Traducción , Adolescente , Adulto , Comparación Transcultural , Epilepsia/psicología , Femenino , Humanos , Indonesia/etnología , Masculino , Persona de Mediana Edad , Psicometría/métodos , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Estigma Social , Adulto Joven
16.
Neurol Sci ; 41(3): 591-598, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31720899

RESUMEN

INTRODUCTION: Genetic (idiopathic) generalized epilepsy (GGE) is a common form of epilepsy characterized by unknown aetiology and a presence of genetic component in its predisposition. METHODS: To understand the genetic factor in a family with GGE, we performed whole exome sequencing (WES) on a trio of a juvenile myoclonic epilepsy/febrile seizure (JME/FS) proband with JME/FS mother and healthy father. Sanger sequencing was carried out for validation of WES results and variant detection in other family members. RESULTS: Predictably damaging variant found in affected proband and mother but absent in healthy father in SCN1A gene was found to be associated with generalized epilepsy and febrile seizure. The novel non-synonymous substitution (c.5753C>T, p.S1918F) in SCN1A was found in all family members with GGE, of which 4/8 were JME subtypes, and/or febrile seizure, while 3 healthy family member controls did not have the mutation. This mutation was also absent in 41 GGE patients and 414 healthy Malaysian Chinese controls. CONCLUSION: The mutation is likely to affect interaction between the sodium channel and calmodulin and subsequently interrupt calmodulin-dependent modulation of the channel.


Asunto(s)
Epilepsia Generalizada/genética , Epilepsia Mioclónica Juvenil/genética , Canal de Sodio Activado por Voltaje NAV1.1/genética , Convulsiones Febriles/genética , Adolescente , Adulto , Anciano , Femenino , Humanos , Malasia , Masculino , Persona de Mediana Edad , Mutación , Linaje , Secuenciación del Exoma
17.
Epilepsy Behav ; 97: 206-211, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31252280

RESUMEN

INTRODUCTION: Prevalence studies of epilepsy in Asia revealed a prevalence ranging from 1.5 to 14.0 per 1000 among Asian populations. However, the prevalence of epilepsy in Malaysia is not available for comparison with other countries. This study aimed to translate and validate a Malay brief screening instruments for ascertainment of epilepsy. METHOD: We translated into Malay a brief screening instrument for ascertainment of epilepsy designed and validated by Ottman et al., using the three-stage cross-cultural adaptation process developed by the International Quality of Life Assessment (IQOLA) project. We then administered the translated questionnaire via online survey to 162 cases (patients with epilepsy under follow-up care at the neurology clinic in University of Malaya Medical Centre, Kuala Lumpur) and 146 controls with no known history of epilepsy for validation. RESULTS: Applying the most liberal definition for a positive screen, we obtained a sensitivity of 96.3% (95% confidence interval [CI]: 91.8-98.5%), with a specificity of 66.4% (95% CI: 58.1-73.0%) and positive predictive value (PPV) of 2.0%. The most stringent definition for a positive screen (only epilepsy) resulted in a sensitivity of 97.4% (95% CI: 62.0-72.6%), specificity of 98.6% (95% CI: 94.6-99.7%), and PPV of 26.6%. Narrowing the definition of a positive screen decreased sensitivity but improved PPVs. When compared to the original English questionnaire, the sensitivities were similar for all four definitions of a positive screen. CONCLUSION: This is the first validated epilepsy screening questionnaire in the Malay language and represents a useful tool for the ascertainment of epilepsy in population-based studies.


Asunto(s)
Epilepsia/diagnóstico , Pueblo Asiatico , Comparación Transcultural , Epilepsia/psicología , Humanos , Malasia , Tamizaje Masivo , Valor Predictivo de las Pruebas , Calidad de Vida , Reproducibilidad de los Resultados , Sensibilidad y Especificidad , Encuestas y Cuestionarios , Traducciones
18.
Epilepsy Behav ; 80: 90-97, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29414564

RESUMEN

BACKGROUND: Positive psychological interventions (PPI) are increasingly employed as a coping strategy with physical and mental conditions, including neurological diseases. Its effectiveness on improving wellbeing in people with epilepsy (PWE) has been shown in a few studies. This study aimed to explore factors related to participants' willingness to engage in psychological interventions from the perspective of patients with epilepsy. METHODS: Participants answered a needs assessment questionnaire eliciting information about their illness perception (Brief Illness Perception Questionnaire (Brief-IPQ)), emotions (Hospital Anxiety and Depression Scale (HADS)), willingness to participate in psychological interventions, preferences in types of PPI and intervention designs, as well as barriers in seeking mental health services. RESULTS: A total of 154 patients with epilepsy participated, with a mean age of 37.3years (range 16-86years). Most patients had focal epilepsy (68.2%), and drug-resistant (59.1%). Majority (71.4%) of them indicated a strong willingness to participate in PPI. Out of nine types of PPI, character strengths, mindfulness-based and expressive-based interventions were highly preferred. Those with negative illness perception (p=0.001), anxiety (p=0.004), and being unemployed (p=0.048) were more willing to participate in PPI. Most participants preferred group rather than individual session, and a shorter duration (30min) was favored by most. CONCLUSION: This study captured the self-report willingness to participate in psychological interventions. Findings suggested that psychological interventions delivered in short-group session were highly preferred. Future study is required to determine the feasibility of such design for patients with epilepsy.


Asunto(s)
Adaptación Psicológica , Terapia Cognitivo-Conductual , Epilepsia/terapia , Psicoterapia de Grupo , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Emociones , Epilepsia/psicología , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Atención Plena , Calidad de Vida , Encuestas y Cuestionarios , Adulto Joven
19.
Pharmacogenet Genomics ; 27(7): 275-278, 2017 07.
Artículo en Inglés | MEDLINE | ID: mdl-28570299

RESUMEN

The majority of the carbamazepine-induced Stevens-Johnson syndrome and toxic epidermal necrolysis CBZ-SJS/TEN are associated with HLA-B*15:02 in Asian populations where this allele is common. In contrast, the association with HLA-A*31:01 is only reported in Japanese and Europeans. This study aimed to further investigate the association with HLA-A*31:01 besides HLA-B*15:02 in a multiethnic Malaysian population. Twenty-eight CBZ-SJS/TEN cases and 227 CBZ-tolerant controls were recruited. Association was tested by comparing carrier frequencies of the alleles between cases and controls. Significant associations were detected between HLA-B*15:02 and CBZ-SJS/TEN in independent ethnic groups: Malays [P=2.00×10; odds ratio (OR): 49.0; 95% confidence interval (CI): 9.36-256.81], Chinese (P=0.0047; OR: 14.3; 95% CI: 2.38-86.03) and Indians (P=0.04; OR: 13.8; 95% CI: 1.51-124.99). Combined analysis of all ethnic groups showed a significant association with OR Cochran-Mantel-Haenszel (ORCMH) of 26.6 (95% CI: 12.80-55.25; PCMH=2.31×10). In Indians, HLA-A*31:01 was found to be associated significantly with CBZ-SJS/TEN (P=0.023; OR: 10.4; 95% CI: 1.64-65.79) and combined analyses of both variants, HLA-A*31:01 and HLA-B*15:02, increased the strength of the association (P=0.0068; OR: 14.3; 95% CI: 2.20-92.9). Besides HLA-B*15:02, our study found a new association between HLA-A*31:01 and CBZ-SJS/TEN in Indians.


Asunto(s)
Carbamazepina/efectos adversos , Etnicidad/genética , Antígenos HLA-A/genética , Antígenos HLA-B/genética , Síndrome de Stevens-Johnson/etiología , Síndrome de Stevens-Johnson/genética , Adolescente , Adulto , Anciano , Alelos , Pueblo Asiatico/genética , Estudios de Casos y Controles , Niño , Femenino , Humanos , Malasia , Masculino , Persona de Mediana Edad , Adulto Joven
20.
Epilepsy Behav ; 72: 150-155, 2017 07.
Artículo en Inglés | MEDLINE | ID: mdl-28582727

RESUMEN

PURPOSE: Epilepsy is a significant yet seriously underappreciated public health issue in Mainland China. The stigma and discrimination toward people with epilepsy (PWE) and their families are especially severe in China based on cultural misconceptions which cause tremendous psychological, economic and social burdens. It is imperative to formulate a targeted public intervention to eliminate knowledge gaps and correct these misconceptions of epilepsy. However, to date, the essential tools that may drive such an intervention by measuring the public perspective on PWEs is lacking in China. The goal of this study is to test the reliability and validity of a Simplified Chinese version of the "Public Attitude Toward Epilepsy" scale (PATE) in Mainland China which can be used to understand the content and identify the possible sources of stigma to better inform the design and focus of future stigma reduction interventions. METHODS: The standard procedure of cross-cultural adaptation was used in the translation process. Subjects from different economic and social backgrounds were enrolled by convenience sampling in central China. Exploratory factor analysis and confirmatory factor analysis were used to check the underlying factor structure of the items. Furthermore, Cronbach's alpha was utilized to assess internal consistency. RESULTS: 199 respondents were included in the final analysis. Content validity of this Chinese PATE was assessed to be adequate for assessing public attitudes toward epilepsy among the mainland Chinese. Two factors were extracted from the data by exploratory factor analysis; confirmatory factor analysis further confirmed good consistency of theoretical constructs between the original Public Attitudes Toward Epilepsy scale and our Chinese PATE. Our Chinese PATE presented excellent internal consistency (α=0.853-0.909). CONCLUSION: This version of the Chinese PATE showed acceptable psychometric properties, indicating that it can be implemented in surveying public attitudes toward epilepsy in Mainland China.


Asunto(s)
Pueblo Asiatico/psicología , Epilepsia/epidemiología , Epilepsia/psicología , Opinión Pública , Encuestas y Cuestionarios/normas , Traducción , Adolescente , Adulto , Anciano , Actitud , China/epidemiología , Comparación Transcultural , Femenino , Humanos , Masculino , Persona de Mediana Edad , Distribución Aleatoria , Reproducibilidad de los Resultados , Estigma Social , Adulto Joven
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