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.

METHODS: A study was conducted among PWE attending two tertiary care hospitals of Islamabad and Rawalpindi, Pakistan. The EDS, SQ, and HRQoL were evaluated by Urdu versions of Epworth Sleepiness Scale (ESS), Pittsburgh Sleep Quality Index (PSQI), and Quality of Life in Epilepsy-31 (QOLIE-31).

RESULTS: The study included 200 PWE and 51 healthy controls with mean (SD) ages of 33.1 ± 13.9, 32.9 ± 10.9, and a disease duration of 5.01 ± 6.17, respectively. The majority of the respondents (n = 130, 65%) had poor seizure control, and most of these (n = 88, 68%) were on combination antiepileptic drug (AED) therapy. In comparison to controls, a higher number of PWE had EDS by ESS (score ≥ 11, 10% vs. 40%, p-value 0.00), and poor SQ by PSQI (score > 5, 9% vs. 71%, p-value 0.00). A multiple logistic regression analysis reveals that the factors significantly associated with EDS were: female gender; increasing age; seizure control; duration of epilepsy; and combination AED therapy. A second multiple binary logistic regression analysis suggests that factors significantly associated with poor SQ were: increasing age; female gender; poor seizure control; and combination therapy. The Hierarchical multivariate analysis suggests that poor seizure control, EDS, and poor SQ were significant predictors of low HRQoL.

METHODS: A hybrid decision tree and Markov model was developed to evaluate three strategies for treating newly diagnosed focal epilepsy: CBZ direct therapy, levetiracetam (LEV) direct therapy, and therapy based on HLA-B*15:02 test results. From a societal perspective, base case and sensitivity analyses were carried out over a lifetime.

RESULTS: Direct administration of CBZ appears to have a slightly lower average cost than the HLA-B*15:02 allele screening strategy. The increase in quality-adjusted life year (QALY) in HLA-B*15:02 screening before treatment related to the cost difference reached 0.519 with an incremental cost-effectiveness ratio (ICER) of around USD 984 per unit of QALY acquisition. Direct treatment of LEV increased treatment costs by almost USD 2000 on average compared to the standard CBZ strategy. The increase in QALY is 0.834 in direct levetiracetam treatment, with an ICER of around USD 2230 for each QALY processing.

METHOD: A cross-sectional survey was conducted at a tertiary care center in Malaysia from February 2019 to June 2019. Parents of children with epilepsy who were on AED for at least 3 months and aged ≤18 years old were recruited. Medication self-management was assessed using a validated Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ). A higher total score reflects better medication self-management.

METHOD: This study recruited Sundanese from Tasikmalaya and Minahasan from Manado using the Indonesian Public Attitudes Toward Epilepsy (PATE) scale. The results were compared to the Javanese and Malaysian data in previous studies.

RESULT: A total of 200 respondents, 100 from each ethnic group were recruited, with a mean age of 38.51 years. They were predominantly females (54%) and had secondary education level or lower (56.67%). The Javanese had a higher total mean score, indicating poorer attitudes toward epilepsy, as compared to the Minahasan and Sundanese groups. These differences were noted in the personal domain, but not the general domain. There were no significant differences in the mean scores in both personal and general domains between the Minahasan, Sundanese, and Malaysian populations. Subanalysis on the aspects of life showed that the Javanese had a significantly higher score in the aspects of education, marital relationship, and employment.

METHODS: The systematic search utilized established databases such as Scopus, Ovid, Web of Science, Medline, Wiley Online, and Cochrane Library. Studies published from inception to December 15, 2022, were selected. Publications describing the development of tools to measure seizure severity among adult epilepsy patients were included. Outcome measures including the tool's content, development methods, validity, and reliability assessments were compared.

RESULTS: The search produced eight publications describing the development of eight seizure severity assessment tools. One of these tools is part of a multidimensional assessment of the overall impact of epilepsy. The frequently used method in the initial development was the qualitative method (n = 6) where two publications reanalyzed the items from previous studies. Face validity was the most common validation test conducted (n = 4). At least one reliability assessment was conducted for each of the tools, most commonly by the test-retest method (n = 6) and inter-rater reliability (n = 5). All of these tools cover the components of pre-ictal (warning/aura), ictal, and postictal (recovery) events.

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).