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癫痫患儿权益倡导:利用世界卫生大会决议。倡导特别工作组,儿科学委员会,国际抗癫痫联盟。

Advocacy for children with epilepsy: Leveraging the WHA resolution. Advocacy Task Force, Commission of Pediatrics, International League Against Epilepsy.

作者信息

Wilmshurst Jo M, Guekht Alla, Secco Mary, Helen Cross J, Perucca Emilio

机构信息

Department of Paediatric Neurology Red Cross War Memorial Children's Hospital Neuroscience Institute, University of Cape Town Cape Town South Africa.

Department of Neurology, Neurosurgery and Genetics Russian National Research Medical University and Moscow Research and Clinical Center for Neuropsychiatry Moscow Russia.

出版信息

Epilepsia Open. 2018 May 14;3(2):167-174. doi: 10.1002/epi4.12220. eCollection 2018 Jun.

Abstract

In May 2015 the World Health Assembly (WHA) approved the Resolution on the Global Burden of Epilepsy. This report addresses how the Resolution can be leveraged to improve the care of children with epilepsy worldwide. Children with epilepsy have unique needs and face unique challenges from stigma at all levels of society. Children lack a voice to lobby for their own needs, including their right to have access to education. Effective leadership and governance should be enhanced through the support of stakeholders empowered to counsel, advise, and lobby for appropriate care. National health care plans should integrate primary and specialist care, and they need to be adapted to local specificities. Antiepileptic medicines should be widely accessible in appropriate, sustained, and affordable ways. Public awareness initiatives are needed to improve the inclusion of affected children in society and to reduce stigma. Cost-effective interventions are also needed to address preventable causes of epilepsy. Without greater investment in research, evidence-based interventions cannot be implemented. Through all of this, civil society must be engaged to ensure that the multivariate dimensions from the clinic to the community are addressed to fulfil the needs of children with epilepsy.

摘要

2015年5月,世界卫生大会(WHA)批准了关于全球癫痫负担的决议。本报告阐述了如何利用该决议来改善全球癫痫患儿的护理。癫痫患儿有独特的需求,并在社会各层面面临因污名化而产生的独特挑战。儿童缺乏为自身需求游说的声音,包括获得教育的权利。应通过利益相关者的支持来加强有效的领导和治理,这些利益相关者有权为适当的护理提供咨询、建议和游说。国家医疗保健计划应整合初级和专科护理,并且需要根据当地具体情况进行调整。抗癫痫药物应以适当、持续且负担得起的方式广泛提供。需要开展提高公众意识的举措,以促进受影响儿童融入社会并减少污名化。还需要具有成本效益的干预措施来解决癫痫的可预防病因。如果没有对研究的更多投入,就无法实施基于证据的干预措施。通过所有这些措施,必须让民间社会参与进来,以确保解决从诊所到社区的多方面问题,从而满足癫痫患儿的需求。

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