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.
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.
METHOD: Prospective cohort study on CWE age 7-18 years old with no comorbidities. Epilepsy education was delivered using Epigame. CWE completed AKA questionnaire before (time point 1 [TP1]), immediately after (TP2), 3 months (TP3) after provision of Epigame. Child self-report Health-Related Quality of Life Measurement for Children with Epilepsy (CHEQOL-25) questionnaire was completed at TP1 and TP3.
RESULTS: Total of 106 CWE participated in this study (mean age of 13.3 years). Baseline (TP1) AKA was rated "very low to moderate" for awareness domain in 95.3 %, "very low to moderate" for knowledge domain in 67 %, "negative to indifferent" for attitude domain in 54.7 %, and "very poor to moderate' for total AKA score domain in 84 %. "Positive to very positive" for child attitude domain was significantly associated with parents with "positive to very positive" for attitude domain (OR 10.6, 95 % CI 3.23-34.66). "Good to excellent" for total child AKA domain was significantly associated with parents with "Good to excellent" for total AKA domain (OR 5.2, 95 % CI 1.16-15.02) and with
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: 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.
CONCLUSION: The identified tools described the assessment of seizure severity using various subscales. The emergence of new methods in quantifying seizure severity unfolds opportunities in discovering more comprehensive assessments of seizure severity in both clinical trials and daily clinical practice.
METHODS: Cross-sectional study of all CWE aged 8-18years old with at least 6months' duration of epilepsy, minimum reading level of primary school education Year 1, and attending mainstream education. Quality of life was measured using the parent-proxy and child self-report of Quality of Life Measurement for Children with Epilepsy (CHEQOL-25) questionnaire. Total and subscale CHEQOL-25 scores were obtained. The levels of parent-child agreement were determined using intraclass correlation coefficients (ICC). Family functioning was assessed using the General functioning subscale (GF-12).
RESULTS: A total of 115 CWE and their parents participated in the study. In general, Malaysian parents rated children's total CHEQOL-25 scores poorer than the children themselves [mean total parent score: 68.56 (SD: 10.86); mean total child score: 71.82 (SD: 9.55)]. Agreement between child and parent on the CHEQOL-25 was poor to moderate (ICC ranged from 0.31-0.54), with greatest discordance in the epilepsy secrecy domain (ICC=0.31, p=0.026). Parent and child were more likely to agree on more external domains: intrapersonal/social (ICC=0.54, p<0.001) and interpersonal/emotional (ICC=0.50, p<0.001). Malay ethnicity, focal seizure and high seizure frequency (≥1 seizure per month) were associated with lower CHEQOL-25 scores. There was a significant but weak correlation between GF-12 and parent-proxy CHEQOL-25 Total Scores (r=-0.186, p=0.046).
CONCLUSION: Our results emphasize the importance to have the child's perspective of their QOL as the level of agreement between the parent and child reported scores were poor to moderate. Malaysian CWE of Malay ethnicity, those with focal seizures or high seizure frequency are at risk of poorer QOL.
METHODS: This was a single-center cross-sectional study. We recruited 159 participants diagnosed with epilepsy on antiseizure medications (ASMs). We included those aged 18 years and above, excluding patients with long-term medical conditions that would affect vitamin D metabolism. Sociodemographic data and details of epilepsy were collated. Venous sampling was performed to analyze the levels of albumin-corrected calcium, phosphate, alkaline phosphatase, and 25-hydroxyvitamin D3 [25(OH)D]. Serum 25(OH)D level is defined as deficient (<20 ng/ml), insufficient (20-29 ng/ml), and sufficient (≥30 ng/ml).
RESULTS: The study reported that 73 (45.9%) participants had vitamin D deficiency, 38 (23.9%) had vitamin D insufficiency, and 48 (30.2%) patients had sufficient vitamin D levels. The predictors identified were PWE aged 18 to 44 years old (p = 0.001), female gender (OR 3.396, p = 0.002), and ethnicity (p
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.
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).
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
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.
RESULTS: A total of 166 patients were recruited. The mean ± standard deviation (SD) age of patients was 8.20 ± 5.21 years, and 51.8% and 36.7% of patients have generalized seizure and focal seizure, respectively. The mean ± SD PEMSQ score was 116.2 ± 11.28 from a total score of 135. Among the four domains of PEMSQ, the barriers to treatment contributed to the lowest mean scores. Univariate analysis showed that the following were significantly associated with poorer medication self-management: differences in ethnicity, religion; higher number of medications; presence of comorbidities; inability to swallow tablets; and a more complex AED regimen. Other variables were not significant. Multivariate analysis showed that only ethnicity and presence of comorbidity remained independently significant (R2 = 0.14; F [4, 161] = 6.28; 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.