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美国癫痫协会/国际抗癫痫联盟北美联合特别工作组关于美国癫痫医疗保健差异的研究

American Epilepsy Society/International League Against Epilepsy-North America Joint Task Force for Epilepsy Health Care Disparities in the United States.

作者信息

Kapur Jaideep, Clarke Dave, Etienne Mill, Gutierrez Camilo, Jobst Barbara C, Johnson Emily, Joshi Sucheta, Kiriakopoulos Elaine T, Labiner David M, Lado Fred A, Lekoubou Alain, Lowenstein Daniel H, Parko Karen, Riker Ellen, Shellhaas Renée A, Sirven Joseph I, Skjei Karen, Stern John M, Welty Timothy E, Eickmeyer Adam B, Strickland Shawna L

机构信息

University of Virginia, USA.

University of Texas at Austin, USA.

出版信息

Epilepsy Curr. 2025 Jun 9:15357597251342227. doi: 10.1177/15357597251342227.

Abstract

Numerous factors including social determinants of health, knowledge gaps, economic challenges, workforce limitations, and health system deficiencies are associated with significant disparities in access to health care services and health outcomes for people with epilepsy (PWE). The American Epilepsy Society (AES) and the International League Against Epilepsy-North America (ILAE-NA) established a joint task force to explore and develop recommendations to address health care disparities experienced by PWE. The task force gathered foundational knowledge through meetings, public and patient organization comments and discussions to develop consensus recommendations. We enumerate the recommendations and discuss the rationale behind them to reduce disparities in epilepsy care through comprehensive research, inclusive clinical practices, robust advocacy, and targeted educational initiatives. While our recommendations are focused on the United States, we acknowledge that similar barriers and limitations exist for PWE globally and that these also need to be addressed within their local domains and with attention to unique factors therewithin.

摘要

包括健康的社会决定因素、知识差距、经济挑战、劳动力限制和卫生系统缺陷在内的众多因素,与癫痫患者(PWE)在获得医疗服务和健康结果方面的显著差异相关。美国癫痫协会(AES)和国际抗癫痫联盟北美分会(ILAE-NA)成立了一个联合特别工作组,以探索并制定建议,解决PWE所经历的医疗保健差异问题。该特别工作组通过会议、公众和患者组织的意见及讨论收集基础知识,以制定共识性建议。我们列举这些建议,并讨论其背后的基本原理,通过全面研究、包容性临床实践、有力宣传和有针对性的教育举措来减少癫痫护理方面的差异。虽然我们的建议侧重于美国,但我们承认,全球范围内的PWE也存在类似的障碍和限制,并且在其当地领域也需要解决这些问题,并关注其中的独特因素。

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