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 ± 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
METHOD: A total of 2218 PWE were recruited retrospectively into this study. Deceased cases from 2009-2018 were identified from the National Registry Department of Malaysia. Age-, gender-, and ethnic-specific SMR were calculated.
RESULT: There was a total of 163 deaths, of which 111 (68.1%) were male. The overall case-fatality rate (CFR) was 7.3%. Male PWE had higher CFR (9.2%) compared to females (5.1%, p<0.001). The annual death rate of PWE was 867 per 100, 000 persons. The overall all-cause SMR was 1.6 (CI 95% 1.3-1.8). The SMR for younger age groups (15-19 and 20-29 years) were higher (5.4-5.5) compared to other age groups (0.4-2.5). Overall SMR for male PWE (1.8, 95% CI 1.5-2.1) was higher than females (1.2, 95% CI 0.9-1.6). However, the SMR for female PWE in the younger age groups (15-19, 20-29 and 30-39 years) was higher. SMR among the Indian PWE was the highest (1.6, 95% CI 1.2-2.0) compared to the Chinese (1.5, 95% CI 1.2-1.9) and the Malays (1.4, 95% 1.0-1.9). The CFR was higher in those with focal epilepsy (8.5% vs. 2.5-3.7% in genetic and other generalized epilepsies, p=0.003), epilepsy with structural cause (9.5% vs. 5.9% in others, p=0.005) and uncontrolled seizures (7.9% vs. 5.2% in seizure-free group, p<0.001).
CONCLUSION: The mortality rate of PWE in Malaysia is higher than that of the general population but lower compared to other Asian countries. Specifically, the rates are higher in the younger age group, male gender, and Indian ethnicity. Those with focal epilepsy, structural causes and uncontrolled seizures have higher mortality rates.
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 ± 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 ± 4.32 vs. 4.79 ± 4.26, p
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.
METHOD: Deceased PWE from 2005 to 2020 were identified from the National Registry Department of Malaysia. The details of the cause of death and predictors for epilepsy-related deaths was ascertained from medical records and phone interviews.
RESULT: There were a total of 227 deaths, 144 (63.4%) were male, two (0.9%) underwent autopsy and 46.3% passed away in the community. The majority of deaths (55.5%) were due to causes unrelated to epilepsy. Forty-five (19.8%) death were related to epilepsy, of which, 22 (9.7%) were due to death directly related to epilepsy including probable SUDEP (5.3%) and status epilepticus (4.4%). The cause of death was unknown in 56 (24.7%) cases. Binary logistic regression analysis identified 3 predictors for epilepsy-related deaths, i.e., structural causes (OR 3.09, 95% CI 1.100-8.691, p = 0.032), younger age of death (OR 2.35, 95% CI 1.039-5.333, p = 0.040) and history of brain surgery (OR 8.09, 95% CI 2.014-32.510, p = 0.003). Twelve (5.3%) had probable SUDEP. The incidence rate of probable SUDEP was 0.42 per 1000 person-years. The majority of them had intellectual disability (9/12), generalized tonic-clonic seizures (9/12), and 2 or more ASMs (9/12).
CONCLUSION: Epilepsy-related deaths accounted for 20% of the deaths in PWE, associated with structural cause, younger age of death, and previous brain surgery. Probable SUDEP is not uncommon in Malaysia and could be under-diagnosed.
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 ± 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 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 ± 13.040 vs. 62.15 ± 15.222, p
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.
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).
MATERIAL AND METHODS: This is a retrospective study of epilepsy cases with VEM performed in University Malaya Medical Center (UMMC), Kuala Lumpur, from January 2012 till August 2016.
RESULTS: A total of 137 cases were included. The mean age was 34.5 years old (range 15-62) and 76 (55.8 %) were male. On the first 24 -h of recording (D1), 81 cases (59.1 %) had seizure occurrence, and 109 (79.6 %) by day 2 (D2). One-hundred and nine VEMs (79.6 %) were diagnostic, in guiding surgical decision or further investigations. Of these, 21 had less than 2 seizures recorded in the first 48 h but were considered as diagnostic because of concordant interictal ± ictal activities, or a diagnosis such as psychogenic non-epileptic seizure was made. Twenty-eight patients had extension of VEM for another 24-48 h, and 11 developed seizures during the extension period. Extra-temporal lobe epilepsy and seizure frequency were significant predictors for diagnostic 48 -h VEM. Three patients developed complications, including status epilepticus required anaesthetic agents (1), seizure clusters (2) with postictal psychosis or dysphasia, and all recovered subsequently.
CONCLUSIONS: 48-h video EEG monitoring is cost-effective in resource limited setting.
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.
METHODS: Systematic computerized search of PubMed, Embase, and Web of Science were performed. The meta-analysis of pooled prevalence and 95 % confidence interval (CI) for tumor-related seizures were calculated by using a random effect model. Based on the 2014 epilepsy definition, a mean seizure prevalence of 60 % is used to indicate high seizure prevalence in this study.
RESULTS: 74 studies that reported seizure prevalence with 23,116 patients were included in this meta-analysis. These tumors has higher seizure incidence rate (at least 60 %) with pooled prevalence of 63 % for adult with low-grade astrocytoma (95 % CI: 57-68 %), 65 % for oligodendroglioma (95% CI: 57-72 %), 72 % for oligoastrocytoma (95 % CI: 67-77 %), 81 % for ganglioglioma (95 % CI: 66-97 %) and 94 % for DNET (94 % CI: 83-100 %).
CONCLUSION: This study highlights the type of brain tumors that carry a high seizure prevalence. Screening for subtle seizures and early management of seizures may be beneficial in patients with low-grade astrocytoma (adult), oligodendroglioma, oligoastrocytoma, ganglioglioma or DNET brain tumor.
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.
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.
METHODS: A population-based door-to-door survey was carried out throughout the country, using questionnaire for brief screening in ascertainment of epilepsy, using a questionnaire and its validated multilingual versions. Respondents who were screened positive underwent second-stage diagnostic phone interview by neurologists/ research assistants.
RESULTS: A total 16, 686 respondents participated in the survey and 646 (3.8 %) respondents were screened positive during the first stage interview. A total of 185 consented for second stage diagnostic interview and 118 (63.8 %) respondents were contacted successfully for the second stage diagnostic phone interview, of which 17 (14.4 %) respondents were diagnosed to have epilepsy. An additional 68 (57.6 %) respondents had febrile seizures only. After applying a weighting factor to each respondent to adjust for non-response and for the varying probabilities of selection, the adjusted lifetime epilepsy prevalence was 7.8 in 1000 population, and the adjusted prevalence for active epilepsy was 4.2 in 1000 population in Malaysia.
CONCLUSION: The prevalence of lifetime epilepsy in Malaysia is 7.8 per 1000 persons.
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.