Connolly Anne M, Slade Rob, Uppal Preena, Bye Ann M E
Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia; School of Women's and Children's Health, University of New South Wales, Sydney Children's Hospitals Network - Randwick Campus, Randwick, NSW, Australia.
Department of Neurology, Level 4 Emergency Wing, Sydney Children's Hospitals Network - Randwick Campus, High Street, Randwick, NSW 2031, Australia.
J Clin Neurosci. 2014 Oct;21(10):1831-2. doi: 10.1016/j.jocn.2014.02.019. Epub 2014 Jun 3.
The majority of children and adolescents with epilepsy are managed in the community setting by general paediatricians. However, there is a paucity of practical, relevant information and standardised management documents assisting paediatricians. In the era of sub-specialisation, an electronic educational resource developed by specialists in epilepsy and paediatrics enhances the interface between tertiary and secondary/primary care. We aimed to create a website (www.pennsw.com.au) designed to optimise the care of all children and adolescents living with epilepsy and to assess its clinical usefulness. The site provides clinicians and families an aligned resource, including key information on epilepsy syndromes, medication usage and adverse effects, safety (sleep deprivation, water sports), driving, pregnancy, psychosocial impact of epilepsy and coping skills. General paediatricians and carers completed a questionnaire, utilising rating scales and open ended questions, to evaluate design, content and clinical usefulness. Forty-nine general paediatricians with a median 12 years of paediatric practice participated. Thirty-two carers participated. Epilepsy syndrome was focal in 59% of the children and generalised in 41%. The majority of participants (paediatricians: 84-100%, families: 69-100%) rated the website as well designed, practical, informative and clinically useful. General paediatricians considered the "Medication" pages and "Epilepsy Management Documents" as practically useful. Carers recorded the "Family Resources", seizure recording documents, the support information on mental health, and the "Coping with Epilepsy" segment as most informative. General paediatricians and carers highly valued the website, reflected by 120,000 page views in 12 months since its launch.
大多数患有癫痫的儿童和青少年由普通儿科医生在社区环境中进行管理。然而，缺乏实用、相关的信息以及协助儿科医生的标准化管理文件。在专科细分的时代，由癫痫和儿科专家开发的电子教育资源增强了三级医疗与二级/初级医疗之间的衔接。我们旨在创建一个网站（www.pennsw.com.au），以优化对所有癫痫患儿和青少年的护理，并评估其临床实用性。该网站为临床医生和家庭提供了一个统一的资源，包括有关癫痫综合征、药物使用及不良反应、安全（睡眠剥夺、水上运动）、驾驶、怀孕、癫痫的心理社会影响以及应对技巧的关键信息。普通儿科医生和护理人员完成了一份问卷，使用评分量表和开放式问题来评估网站的设计、内容和临床实用性。49名拥有12年儿科实践经验中位数的普通儿科医生参与了调查。32名护理人员参与了调查。59%的儿童癫痫综合征为局灶性，41%为全身性。大多数参与者（儿科医生：84%-100%，家庭：69%-100%）将该网站评为设计良好、实用、信息丰富且具有临床实用性。普通儿科医生认为“药物”页面和“癫痫管理文件”非常实用。护理人员认为“家庭资源”、癫痫发作记录文件、心理健康支持信息以及“应对癫痫”部分信息最丰富。自网站推出后的12个月内，有12万次页面浏览量，这反映出普通儿科医生和护理人员对该网站的高度重视。
