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: 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.
METHODS: This prospective study includes parents of CWE aged 8-18 years old with no comorbidities. Epilepsy education was delivered using the IAEEP. Parents completed an AKA questionnaire before (time point 1 [TP1]), immediately after (TP2), and 4-6 months (TP3) after the provision of IAEEP. Parent proxy report of Health-Related Quality of Life Measurement for Children with Epilepsy (CHEQOL)-25 questionnaire and Depression, Anxiety, and Stress Scale (DASS)-21 questionnaire was completed at TP1 and TP3.
RESULTS: A total of 78 parents participated in the study. At baseline (TP1), parental responses were rated as "moderate" for awareness domain, "high" for knowledge domain, "very positive" for attitude domain, and "good" for total AKA score domain. No epilepsy or parental characteristics were associated with the low baseline parental AKA levels. After IAEEP intervention, there was a significant increase in all AKA subdomain scores. Post-IAEEP, the AKA of parents were rated as "very high" for awareness domain, "very high" for knowledge domain, "very positive" for attitude domain, and "excellent" for total AKA domain at both TP2 and TP3. Parent proxy CHEQOL-25 report showed significant increments in interpersonal/social and secrecy scale scores between TP1 and TP3. There were no significant differences in the DASS-21 scores between TP1 and TP3.
CONCLUSION: The IAEEP is an effective epilepsy educational tool to increase the levels of AKA among parents of CWE. Following the use of the IAEEP, parents of CWE also reported an improvement of their child's quality of life in the interpersonal/social and epilepsy secrecy CHEQOL-25 domains. There was no impact on parental mental health following exposure to the IAEEP.
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: 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.