Sajatovic Martha, Jobst Barbara C, Shegog Ross, Bamps Yvan A, Begley Charles E, Fraser Robert T, Johnson Erica K, Pandey Dilip K, Quarells Rakale C, Scal Peter, Spruill Tanya M, Thompson Nancy J, Kobau Rosemarie
Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, Ohio.
Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, New Hampshire.
Am J Prev Med. 2017 Mar;52(3 Suppl 3):S241-S245. doi: 10.1016/j.amepre.2016.07.026.
Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.
癫痫是一系列复杂的病症,在美国约有290万人受其影响。与其他慢性疾病类似,癫痫患者在病症管理、治疗、并发抑郁症、残疾、社会劣势及污名化等方面面临挑战。两次关于公共卫生与癫痫的全国性会议(1997年、2003年)以及2012年美国医学研究所关于癫痫公共卫生层面的报告都凸显了重要的知识空白,并强调了基于证据、可扩展的癫痫自我管理项目的必要性。疾病控制与预防中心通过预防研究中心“良好管理癫痫”(MEW)网络,将自我管理研究与传播方面的建议转化为一项应用研究项目。MEW网络的目标是通过开发有效的干预措施来推进癫痫自我管理研究,这些干预措施能够广泛传播,供人们在家中、医疗服务提供者办公室或社区环境中使用。本报告的目的是提供MEW网络研究进展的最新情况,其涵盖疗效、效果及传播方面。许多干预措施采用电子健康策略来消除护理障碍(如交通不便、功能受限和污名化)。这个成熟研究网络的优势在于合作文化、基于社区的伙伴关系、电子健康方法及其一系列预防活动,这些活动从针对难以接触群体的疗效研究到专注于医疗服务提供者培训和知识转化的倡议不等。MEW网络与全国各地的组织合作,以扩大其能力、帮助利用资金和其他资源,并加强MEW网络项目及工具的开发、传播和可持续性。自2007年以来,在针对慢性病或癫痫负担的国家倡议指导下,MEW网络已发表了43多篇科学期刊文章、两份研究报告、七章书籍内容以及62次演讲和海报展示。迄今为止,国家癫痫基金会、各州癫痫基金会分支机构及其他利益相关者已采用并传播了两个项目。MEW网络成员最近的扩充将有助于扩大未来的影响力及公共卫生影响。