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治疗全人:为面临健康不平等的患者提供便利的医疗服务。

Treating the whole patient: Facilitating health care for patients facing health inequity.

作者信息

Sanchez-Valle Amarilis, Hicks Corey

机构信息

Department of Pediatrics, Division of Genetics and Metabolism, University of South Florida, 2 Tampa General Cir 5th Floor, Tampa, FL 33606, USA.

Ultra-Rare Medicines, Amgen, One Amgen Center Dr, Thousand Oaks, CA 91320, USA.

出版信息

Mol Genet Metab Rep. 2024 Apr 18;39(Suppl 1):101082. doi: 10.1016/j.ymgmr.2024.101082. eCollection 2024 Aug.

Abstract

Social determinants of health (SDOH) are conditions in which people are born, grow, live, work, and age. Variations in these conditions are largely responsible for health inequities, the differences in health status or distribution of health resources within a population. Despite recent increases in attention to SDOH in research and clinical practice, few, if any, resources exist to describe how these complex dynamics impact patients with inborn errors of metabolism. Recognizing the role real-life narratives have as a powerful educational tool, we compiled a series of 3 original cases, published as part of this special supplement, to illustrate challenges and learnings related to SDOH within the context of urea cycle disorders and phenylketonuria.

摘要

健康的社会决定因素(SDOH)是人们出生、成长、生活、工作和衰老的环境。这些环境的差异在很大程度上导致了健康不平等,即人群中健康状况或健康资源分配的差异。尽管最近研究和临床实践中对SDOH的关注有所增加,但几乎没有(如果有的话)资源来描述这些复杂的动态如何影响先天性代谢缺陷患者。认识到真实生活叙事作为一种强大教育工具的作用,我们汇编了3个原创病例系列,作为本特刊增刊的一部分发表,以说明在尿素循环障碍和苯丙酮尿症背景下与SDOH相关的挑战和经验教训。

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