{"title":"影响癫痫儿童及其照顾者生活质量的危险因素：日本横断面在线调查的二次分析。","authors":"Shin Okazaki, Takuya Kumagai, Shinichi Nishiuma, Katsuhiko Iwasaki, Kazuaki Yamamoto, Kinya Kokubo, Hiroomi Hayashi, Eiji Nakagawa","doi":"10.1016/j.yebeh.2024.110227","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to evaluate the quality of life (QOL) in children with epilepsy and their caregivers, as well as the caregiver burden, through a secondary analysis of a cross-sectional online survey in Japan.</p><p><strong>Methods: </strong>Eligible participants were caregivers of children (aged < 18 years) diagnosed with epilepsy. Children's QOL was measured using the daily living subset of the Japanese version of the Quality of Life in Children with Epilepsy (QOLCE-Js52). Caregiver QOL and burden were measured using the physical component summary (PCS) and mental component summary (MCS) of the Short Form-8 (SF-8) and the short Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8).</p><p><strong>Results: </strong>Between March 2023 and May 2023, 1,147 caregivers completed the survey. Most caregivers (n = 1,144, 99.7 %) were parents. The mean (standard deviation [SD]) QOLCE-Js52 score was 68.3 (14.2). The mean (SD) scores of the PCS and MCS of the SF-8 were 46.5 (4.5) and 43.7 (5.1), respectively, which were significantly lower than those of the general Japanese population (p < 0.001 for both means). The mean (SD) J-ZBI_8 score was 4.9 (7.1), with 13.2 % of caregivers scoring at least 13, a predictor of depression. Multivariable regression analysis showed that disability was a significant risk factor for lower QOL and increased caregiver burden (p < 0.001). Frequent seizures, emergency transportation, and longer epilepsy duration were associated with poorer QOL in children and caregivers.</p><p><strong>Conclusion: </strong>Risk factors, such as emergency transport, may be mitigated by rescue medication in non-hospital settings.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110227"},"PeriodicalIF":2.3000,"publicationDate":"2025-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Risk factors affecting quality of life in children with epilepsy and their caregivers: A secondary analysis of a cross-sectional online survey in Japan.\",\"authors\":\"Shin Okazaki, Takuya Kumagai, Shinichi Nishiuma, Katsuhiko Iwasaki, Kazuaki Yamamoto, Kinya Kokubo, Hiroomi Hayashi, Eiji Nakagawa\",\"doi\":\"10.1016/j.yebeh.2024.110227\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>This study aimed to evaluate the quality of life (QOL) in children with epilepsy and their caregivers, as well as the caregiver burden, through a secondary analysis of a cross-sectional online survey in Japan.</p><p><strong>Methods: </strong>Eligible participants were caregivers of children (aged < 18 years) diagnosed with epilepsy. Children's QOL was measured using the daily living subset of the Japanese version of the Quality of Life in Children with Epilepsy (QOLCE-Js52). Caregiver QOL and burden were measured using the physical component summary (PCS) and mental component summary (MCS) of the Short Form-8 (SF-8) and the short Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8).</p><p><strong>Results: </strong>Between March 2023 and May 2023, 1,147 caregivers completed the survey. Most caregivers (n = 1,144, 99.7 %) were parents. The mean (standard deviation [SD]) QOLCE-Js52 score was 68.3 (14.2). The mean (SD) scores of the PCS and MCS of the SF-8 were 46.5 (4.5) and 43.7 (5.1), respectively, which were significantly lower than those of the general Japanese population (p < 0.001 for both means). The mean (SD) J-ZBI_8 score was 4.9 (7.1), with 13.2 % of caregivers scoring at least 13, a predictor of depression. Multivariable regression analysis showed that disability was a significant risk factor for lower QOL and increased caregiver burden (p < 0.001). Frequent seizures, emergency transportation, and longer epilepsy duration were associated with poorer QOL in children and caregivers.</p><p><strong>Conclusion: </strong>Risk factors, such as emergency transport, may be mitigated by rescue medication in non-hospital settings.</p>\",\"PeriodicalId\":11847,\"journal\":{\"name\":\"Epilepsy & Behavior\",\"volume\":\"163 \",\"pages\":\"110227\"},\"PeriodicalIF\":2.3000,\"publicationDate\":\"2025-01-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Epilepsy & Behavior\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1016/j.yebeh.2024.110227\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"BEHAVIORAL SCIENCES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Epilepsy & Behavior","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.yebeh.2024.110227","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BEHAVIORAL SCIENCES","Score":null,"Total":0}
Risk factors affecting quality of life in children with epilepsy and their caregivers: A secondary analysis of a cross-sectional online survey in Japan.
Objective: This study aimed to evaluate the quality of life (QOL) in children with epilepsy and their caregivers, as well as the caregiver burden, through a secondary analysis of a cross-sectional online survey in Japan.
Methods: Eligible participants were caregivers of children (aged < 18 years) diagnosed with epilepsy. Children's QOL was measured using the daily living subset of the Japanese version of the Quality of Life in Children with Epilepsy (QOLCE-Js52). Caregiver QOL and burden were measured using the physical component summary (PCS) and mental component summary (MCS) of the Short Form-8 (SF-8) and the short Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8).
Results: Between March 2023 and May 2023, 1,147 caregivers completed the survey. Most caregivers (n = 1,144, 99.7 %) were parents. The mean (standard deviation [SD]) QOLCE-Js52 score was 68.3 (14.2). The mean (SD) scores of the PCS and MCS of the SF-8 were 46.5 (4.5) and 43.7 (5.1), respectively, which were significantly lower than those of the general Japanese population (p < 0.001 for both means). The mean (SD) J-ZBI_8 score was 4.9 (7.1), with 13.2 % of caregivers scoring at least 13, a predictor of depression. Multivariable regression analysis showed that disability was a significant risk factor for lower QOL and increased caregiver burden (p < 0.001). Frequent seizures, emergency transportation, and longer epilepsy duration were associated with poorer QOL in children and caregivers.
Conclusion: Risk factors, such as emergency transport, may be mitigated by rescue medication in non-hospital settings.
期刊介绍：
Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy.
Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging.
From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.
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