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Epilepsy & Behavior: Making peoplewith epilepsy the focus
Epilepsy & Behavior 40 (2014) 111–112
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Letter to the Editor Epilepsy & Behavior: Making people with epilepsy the focus To the Editor This year marks the 15th anniversary of Epilepsy & Behavior—and we would like to send our best wishes to the journal and to all the editorial board members. Epilepsy & Behavior is one of the fastest-growing international journals devoted to the most current information available in the field of epilepsy, with a particular emphasis on the behavioral and psychosocial aspects of epileptic disorders. It provides not only a useful exchange platform but also a favorable learning opportunity for researchers and clinicians from all over the world. We can recall, as if it were yesterday, our first sight of the reliability and validity of the Chinese version of the Quality of Life in Epilepsy Inventory—89 (QOLIE-89) published in Epilepsy & Behavior in 2007 [1]. Zhao et al. did a test–retest study in order to establish a suitable questionnaire for assessing the quality of life in patients with epilepsy in China. Since then, more than 70 articles and letters have been published in Epilepsy & Behavior concerning all aspects of the studies of epilepsy from mainland China. These articles not only show the particularity and significance of the studies from different cultures but also reveal the consistent emphasis of Epilepsy & Behavior. Firstly, every facet of epileptic disorder is covered. Epilepsy & Behavior has consistently and thoroughly covered various aspects of epilepsy, for instance, genetics and animal models, clinical neurology, neuroimaging, psychiatric and psychosocial aspects of epilepsy, ictal and postictal behavior, and cognitive and affective disturbances. With a special culture and a unique economic and political circumstances, the management of epilepsy in China not only shares some commonalities with other countries but also requires specific approaches from our own research studies. The percentage of types and research areas of articles published in Epilepsy & Behavior from mainland China are summarized in Fig. 1. Secondly, Epilepsy & Behavior has always laid great emphasis on knowledge about the behavioral and psychosocial aspects of epilepsy, such as children with epilepsy, autism, cognitive function, quality of life, marriage, and driving [2–6]. For example, scales and questionnaires always play a vital role in evaluating the severity of disease and quality of life of patients. The number of studies published in this journal which assessed the reliability and validity of different kinds of scales in Chinese has been as much as four in the past 7 years [1,7–9], let alone the number of studies discussing the quality of life and psychosocial situation of patients with epilepsy. Another example is that Epilepsy & Behavior has consistently focused on stigma in China. In 2010, professor Li, who is the president of the China Association Against Epilepsy (CAAE), put forward the best Chinese word equivalent for the English word stigma and conducted a survey as part of the follow-up study of the Global Campaign Against Epilepsy (GCAE) Demonstration Project (DP) in rural China [10]. Other research groups have also implemented several follow-up
http://dx.doi.org/10.1016/j.yebeh.2014.09.036 1525-5050/© 2014 Elsevier Inc. All rights reserved.
studies on this subject [11,12]. In addition, Epilepsy & Behavior published the prevalence of autism-caused disability among Chinese children in the first national population-based survey [3]. The driving status of patients with epilepsy was also firstly published in this journal, which showed that a considerable proportion of patients continue driving despite uncontrolled seizures and more detailed and operational driving restrictions may be needed for patients in China in order to strike a better balance between patients' quality of life and public safety [6]. The examples like these are too many to enumerate. Currently, it is estimated that epilepsy affects up to 9,000,000 people in China, with additional 660,000 developing the condition each year [13]. Therefore, epilepsy not only has a personal impact, but is a social problem. In order to achieve better therapeutic outcomes, the treatment of epilepsy usually means a comprehensive management of the disease, which involves control of seizures and improvement of the patient quality of life. Last but not the least, Epilepsy & Behavior is a journal of equality, justice, and tolerance, concerning individuals from all the countries and regions, not only developed countries but also developing countries. Until now, very few studies have been done in Tibet, and Epilepsy & Behavior has published extremely precious data on the prevalence of convulsive epilepsy and health-related quality of life of the population with convulsive epilepsy in Tibet and the prevalence of epilepsy and alcohol-related risk in rural areas of Tibet Autonomous Region in China [14,15]. Peace and development remain the themes of our era. Preserving peace and promoting development bear on the well-being of all nations and represent the common aspirations of all people. This journal has brought opportunities and favorable conditions for all the researchers and clinicians and, the most essential, a bright future for patients with epilepsy.
9.9%
5.6%
genetics
15.5%
animal model clinical neurology neuroimaging
33.8% neurosurgical-related study 25.4%
behavior and psychosocial aspects of epilepsy others
Fig. 1. The percentage of types and research areas of articles published in Epilepsy & Behavior from mainland China.
112
W. Wang et al. / Epilepsy & Behavior 40 (2014) 111–112
Conflict of interest The authors declare that there are no conflicts of interest.
References [1] Zhao Y, Ding C, Wang Y, Li Z, Zhou Y, Huang Y. Reliability and validity of a Chinese version of the Quality of Life in Epilepsy Inventory (QOLIE-89). Epilepsy Behav 2007;11:53–9. [2] Yu PM, Ding D, Zhu GX, Hong Z. International Bureau for Epilepsy survey of children, teenagers, and young people with epilepsy: data in China. Epilepsy Behav 2009;16: 99–104. [3] Li N, Chen G, Song X, Du W, Zheng X. Prevalence of autism-caused disability among Chinese children: a national population-based survey. Epilepsy Behav 2011;22: 786–9. [4] Zhou B, Zhang Q, Tian L, Xiao J, Stefan H, Zhou D. Effects of levetiracetam as an add-on therapy on cognitive function and quality of life in patients with refractory partial seizures. Epilepsy Behav 2008;12:305–10. [5] Chen J, Zhang Y, Hong Z, Sander JW, Zhou D. Marital adjustment for patients with epilepsy in China. Epilepsy Behav 2013;28:99–103. [6] Chen J, Yan B, Lu H, Ren J, Zou X, Xiao F, et al. Driving among patients with epilepsy in West China. Epilepsy Behav 2014;33:1–6. [7] Wang M, Wu L, Zheng Y, Zhang Q, Li C. The Chinese QOLIE-AD-48: translation, validity, and reliability. Epilepsy Behav 2009;14:476–80. [8] Duan X, Zhang S, Xiao N. Reliability and validity of the PedsQL™ Generic Core Scales 4.0 for Chinese children with epilepsy. Epilepsy Behav 2012;23:431–6. [9] Gao L, Xia L, Pan SQ, Xiong T, Li SC. Psychometric properties of Chinese language Liverpool Seizure Severity Scale 2.0 (LSSS 2.0) and status and determinants of seizure severity for patients with epilepsy in China. Epilepsy Behav 2014;31:187–93. [10] Li S, Wu J, Wang W, Jacoby A, de Boer H, Sander JW. Stigma and epilepsy: the Chinese perspective. Epilepsy Behav 2010;17:242–5.
[11] Yang RR, Wang WZ, Snape D, Chen G, Zhang L, Wu JZ, et al. Stigma of people with epilepsy in China: views of health professionals, teachers, employers, and community leaders. Epilepsy Behav 2011;21:261–6. [12] Guo W, Wu J, Wang W, Guan B, Snape D, Baker GA, et al. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China. Epilepsy Behav 2012;25:282–8. [13] Yu PM, Zhu GX, Ding D, Xu L, Zhao T, Tang XH, et al. Treatment of epilepsy in adults: expert opinion in China. Epilepsy Behav 2012;23:36–40. [14] Zhao Y, Zhang Q, Tsering T, Sangwan, Hu X, Liu L, et al. Prevalence of convulsive epilepsy and health-related quality of life of the population with convulsive epilepsy in rural areas of Tibet Autonomous Region in China: an initial survey. Epilepsy Behav 2008;12:373–81. [15] Zhao YH, Zhang Q, Long N, Yang C, Hong J, Mu L, et al. Prevalence of epilepsy and alcohol-related risk in Zayul County, Tibet Autonomous Region in China: an initial survey. Epilepsy Behav 2010;19:635–8.
Wei Wang Dong-Mei An Feng-Lai Xiao Dong Zhou⁎ Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan Province, China ⁎Corresponding author at: Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan Province 610041, China. Tel.: +86 28 85423038; fax: +86 28 85423550. E-mail address: [email protected] (D. Zhou).
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Letter to the Editor Epilepsy & Behavior: Making people with epilepsy the focus To the Editor This year marks the 15th anniversary of Epilepsy & Behavior—and we would like to send our best wishes to the journal and to all the editorial board members. Epilepsy & Behavior is one of the fastest-growing international journals devoted to the most current information available in the field of epilepsy, with a particular emphasis on the behavioral and psychosocial aspects of epileptic disorders. It provides not only a useful exchange platform but also a favorable learning opportunity for researchers and clinicians from all over the world. We can recall, as if it were yesterday, our first sight of the reliability and validity of the Chinese version of the Quality of Life in Epilepsy Inventory—89 (QOLIE-89) published in Epilepsy & Behavior in 2007 [1]. Zhao et al. did a test–retest study in order to establish a suitable questionnaire for assessing the quality of life in patients with epilepsy in China. Since then, more than 70 articles and letters have been published in Epilepsy & Behavior concerning all aspects of the studies of epilepsy from mainland China. These articles not only show the particularity and significance of the studies from different cultures but also reveal the consistent emphasis of Epilepsy & Behavior. Firstly, every facet of epileptic disorder is covered. Epilepsy & Behavior has consistently and thoroughly covered various aspects of epilepsy, for instance, genetics and animal models, clinical neurology, neuroimaging, psychiatric and psychosocial aspects of epilepsy, ictal and postictal behavior, and cognitive and affective disturbances. With a special culture and a unique economic and political circumstances, the management of epilepsy in China not only shares some commonalities with other countries but also requires specific approaches from our own research studies. The percentage of types and research areas of articles published in Epilepsy & Behavior from mainland China are summarized in Fig. 1. Secondly, Epilepsy & Behavior has always laid great emphasis on knowledge about the behavioral and psychosocial aspects of epilepsy, such as children with epilepsy, autism, cognitive function, quality of life, marriage, and driving [2–6]. For example, scales and questionnaires always play a vital role in evaluating the severity of disease and quality of life of patients. The number of studies published in this journal which assessed the reliability and validity of different kinds of scales in Chinese has been as much as four in the past 7 years [1,7–9], let alone the number of studies discussing the quality of life and psychosocial situation of patients with epilepsy. Another example is that Epilepsy & Behavior has consistently focused on stigma in China. In 2010, professor Li, who is the president of the China Association Against Epilepsy (CAAE), put forward the best Chinese word equivalent for the English word stigma and conducted a survey as part of the follow-up study of the Global Campaign Against Epilepsy (GCAE) Demonstration Project (DP) in rural China [10]. Other research groups have also implemented several follow-up
http://dx.doi.org/10.1016/j.yebeh.2014.09.036 1525-5050/© 2014 Elsevier Inc. All rights reserved.
studies on this subject [11,12]. In addition, Epilepsy & Behavior published the prevalence of autism-caused disability among Chinese children in the first national population-based survey [3]. The driving status of patients with epilepsy was also firstly published in this journal, which showed that a considerable proportion of patients continue driving despite uncontrolled seizures and more detailed and operational driving restrictions may be needed for patients in China in order to strike a better balance between patients' quality of life and public safety [6]. The examples like these are too many to enumerate. Currently, it is estimated that epilepsy affects up to 9,000,000 people in China, with additional 660,000 developing the condition each year [13]. Therefore, epilepsy not only has a personal impact, but is a social problem. In order to achieve better therapeutic outcomes, the treatment of epilepsy usually means a comprehensive management of the disease, which involves control of seizures and improvement of the patient quality of life. Last but not the least, Epilepsy & Behavior is a journal of equality, justice, and tolerance, concerning individuals from all the countries and regions, not only developed countries but also developing countries. Until now, very few studies have been done in Tibet, and Epilepsy & Behavior has published extremely precious data on the prevalence of convulsive epilepsy and health-related quality of life of the population with convulsive epilepsy in Tibet and the prevalence of epilepsy and alcohol-related risk in rural areas of Tibet Autonomous Region in China [14,15]. Peace and development remain the themes of our era. Preserving peace and promoting development bear on the well-being of all nations and represent the common aspirations of all people. This journal has brought opportunities and favorable conditions for all the researchers and clinicians and, the most essential, a bright future for patients with epilepsy.
9.9%
5.6%
genetics
15.5%
animal model clinical neurology neuroimaging
33.8% neurosurgical-related study 25.4%
behavior and psychosocial aspects of epilepsy others
Fig. 1. The percentage of types and research areas of articles published in Epilepsy & Behavior from mainland China.
112
W. Wang et al. / Epilepsy & Behavior 40 (2014) 111–112
Conflict of interest The authors declare that there are no conflicts of interest.
References [1] Zhao Y, Ding C, Wang Y, Li Z, Zhou Y, Huang Y. Reliability and validity of a Chinese version of the Quality of Life in Epilepsy Inventory (QOLIE-89). Epilepsy Behav 2007;11:53–9. [2] Yu PM, Ding D, Zhu GX, Hong Z. International Bureau for Epilepsy survey of children, teenagers, and young people with epilepsy: data in China. Epilepsy Behav 2009;16: 99–104. [3] Li N, Chen G, Song X, Du W, Zheng X. Prevalence of autism-caused disability among Chinese children: a national population-based survey. Epilepsy Behav 2011;22: 786–9. [4] Zhou B, Zhang Q, Tian L, Xiao J, Stefan H, Zhou D. Effects of levetiracetam as an add-on therapy on cognitive function and quality of life in patients with refractory partial seizures. Epilepsy Behav 2008;12:305–10. [5] Chen J, Zhang Y, Hong Z, Sander JW, Zhou D. Marital adjustment for patients with epilepsy in China. Epilepsy Behav 2013;28:99–103. [6] Chen J, Yan B, Lu H, Ren J, Zou X, Xiao F, et al. Driving among patients with epilepsy in West China. Epilepsy Behav 2014;33:1–6. [7] Wang M, Wu L, Zheng Y, Zhang Q, Li C. The Chinese QOLIE-AD-48: translation, validity, and reliability. Epilepsy Behav 2009;14:476–80. [8] Duan X, Zhang S, Xiao N. Reliability and validity of the PedsQL™ Generic Core Scales 4.0 for Chinese children with epilepsy. Epilepsy Behav 2012;23:431–6. [9] Gao L, Xia L, Pan SQ, Xiong T, Li SC. Psychometric properties of Chinese language Liverpool Seizure Severity Scale 2.0 (LSSS 2.0) and status and determinants of seizure severity for patients with epilepsy in China. Epilepsy Behav 2014;31:187–93. [10] Li S, Wu J, Wang W, Jacoby A, de Boer H, Sander JW. Stigma and epilepsy: the Chinese perspective. Epilepsy Behav 2010;17:242–5.
[11] Yang RR, Wang WZ, Snape D, Chen G, Zhang L, Wu JZ, et al. Stigma of people with epilepsy in China: views of health professionals, teachers, employers, and community leaders. Epilepsy Behav 2011;21:261–6. [12] Guo W, Wu J, Wang W, Guan B, Snape D, Baker GA, et al. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China. Epilepsy Behav 2012;25:282–8. [13] Yu PM, Zhu GX, Ding D, Xu L, Zhao T, Tang XH, et al. Treatment of epilepsy in adults: expert opinion in China. Epilepsy Behav 2012;23:36–40. [14] Zhao Y, Zhang Q, Tsering T, Sangwan, Hu X, Liu L, et al. Prevalence of convulsive epilepsy and health-related quality of life of the population with convulsive epilepsy in rural areas of Tibet Autonomous Region in China: an initial survey. Epilepsy Behav 2008;12:373–81. [15] Zhao YH, Zhang Q, Long N, Yang C, Hong J, Mu L, et al. Prevalence of epilepsy and alcohol-related risk in Zayul County, Tibet Autonomous Region in China: an initial survey. Epilepsy Behav 2010;19:635–8.
Wei Wang Dong-Mei An Feng-Lai Xiao Dong Zhou⁎ Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan Province, China ⁎Corresponding author at: Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan Province 610041, China. Tel.: +86 28 85423038; fax: +86 28 85423550. E-mail address: [email protected] (D. Zhou).