悉尼癫痫发病研究评估疾病后果：SESIMIC 观察性癫痫研究方案。
Sydney epilepsy incidence study to measure illness consequences: the SESIMIC observational epilepsy study protocol.
机构信息
Neurological and Mental Health Division, The George Institute for Global Health, The University of Sydney, Sydney, Australia.
出版信息
BMC Neurol. 2011 Jan 9;11:3. doi: 10.1186/1471-2377-11-3.
BACKGROUND
Epilepsy affects an estimated 50 million people and accounts for approximately 1% of days lost to ill health globally, making it one of the most common, serious neurological disorders. While there are abundant global data on epilepsy incidence, prevalence and treatment, there is a paucity of Australian incidence data. There is also a general lack of information on the psychosocial impact and socioeconomic consequences of a new diagnosis of epilepsy on an individual, their family, household, and community which are often specific to the health and social system of each country.
METHODS/DESIGN: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) is an Australian population-based epilepsy incidence and outcome study that will recruit every newly diagnosed case of epilepsy in the Sydney South West Area Health Service to an epilepsy register. Multiple and overlapping sources of notification will be used to identify all new cases of epilepsy over a 24 month period in the Eastern Zone of the Sydney South West Area Health Service (SSWAHS) and follow up will occur over 12 months. SEISMIC will use the International League Against Epilepsy (ILAE) definitions and classifications for epidemiologic studies of epilepsy. The study will examine outcomes including mood, quality of life, employment, education performance, driving status, marital and social problems, medication use, health care usage, costs and stigma.
DISCUSSION
This study is designed to examine how clinical, psychological factors, socioeconomic circumstances, and healthcare delivery influence the experience of epilepsy for individuals and families allowing better targeting of specific services and informing policy makers and practitioners. In addition, the study will provide the basis for a longitudinal population-based cohort study and potentially inform qualitative sub-studies and randomised controlled trials of intervention strategies.
背景
癫痫影响估计有 5000 万人，占全球因病丧失健康天数的约 1%，是最常见、最严重的神经障碍之一。虽然有丰富的全球癫痫发病率、患病率和治疗数据，但澳大利亚发病率数据却很少。关于癫痫新诊断对个人、其家庭、家庭和社区的心理社会影响和社会经济后果的信息也普遍缺乏，这些影响和后果往往因每个国家的卫生和社会系统而异。
方法/设计：悉尼癫痫发病率研究以衡量疾病后果（SEISMIC）是一项澳大利亚基于人群的癫痫发病率和结局研究，将招募悉尼西南地区卫生服务局中每一例新诊断的癫痫患者到癫痫登记处。将使用多个和重叠的通知来源来识别在悉尼西南地区卫生服务局（SSWAHS）东部区域的 24 个月期间所有新的癫痫病例，并在 12 个月内进行随访。SEISMIC 将使用国际抗癫痫联盟（ILAE）对癫痫进行流行病学研究的定义和分类。该研究将检查包括情绪、生活质量、就业、教育表现、驾驶状况、婚姻和社会问题、药物使用、医疗保健使用、成本和耻辱感等结果。
讨论
这项研究旨在研究临床、心理因素、社会经济状况和医疗保健提供如何影响个人和家庭的癫痫体验，从而更好地针对特定服务，并为政策制定者和从业者提供信息。此外，该研究将为一项基于人群的纵向队列研究提供基础，并可能为干预策略的定性子研究和随机对照试验提供信息。
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