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本文引用的文献

1
Rare diseases, common barriers: disparities in pediatric clinical genetics outcomes.罕见病,常见障碍:儿科临床遗传学结果的差异。
Pediatr Res. 2023 Jan;93(1):110-117. doi: 10.1038/s41390-022-02240-3. Epub 2022 Aug 13.
2
Breaking through barriers: the need for effective research to promote language-concordant communication as a facilitator of equitable emergency care.突破障碍:开展有效研究以促进语言一致的沟通作为公平急救护理促进因素的必要性。
J Am Coll Emerg Physicians Open. 2022 Jan 14;3(1):e12639. doi: 10.1002/emp2.12639. eCollection 2022 Feb.
3
The burden of pharmacological treatment on health-related quality of life in people with a urea cycle disorder: a qualitative study.尿素循环障碍患者药物治疗对健康相关生活质量的影响:一项定性研究。
J Patient Rep Outcomes. 2021 Oct 25;5(1):110. doi: 10.1186/s41687-021-00387-x.
4
Health Literacy, Social Determinants of Health, and Disease Prevention and Control.健康素养、健康的社会决定因素以及疾病预防与控制。
J Environ Health Sci. 2020;6(1). Epub 2020 Dec 16.
5
Food insecurity in females with phenylketonuria.苯丙酮尿症女性的粮食不安全状况。
JIMD Rep. 2020 Mar 20;53(1):103-110. doi: 10.1002/jmd2.12115. eCollection 2020 May.
6
Transportation Barriers to Health Care in the United States: Findings From the National Health Interview Survey, 1997-2017.美国医疗保健中的交通障碍:1997-2017 年全国健康访谈调查的结果。
Am J Public Health. 2020 Jun;110(6):815-822. doi: 10.2105/AJPH.2020.305579. Epub 2020 Apr 16.
7
The financial and time burden associated with phenylketonuria treatment in the United States.美国苯丙酮尿症治疗相关的经济和时间负担。
Mol Genet Metab Rep. 2019 Oct 16;21:100523. doi: 10.1016/j.ymgmr.2019.100523. eCollection 2019 Dec.
8
Social Disparities in Health Literacy in the United States.美国健康素养方面的社会差异
Health Lit Res Pract. 2019 Mar 8;3(1):e47-e52. doi: 10.3928/24748307-20190131-01. eCollection 2019 Jan.
9
Social Determinants of Health and Health Disparities Among Immigrants and their Children.移民及其子女的健康社会决定因素与健康差异
Curr Probl Pediatr Adolesc Health Care. 2019 Jan;49(1):23-30. doi: 10.1016/j.cppeds.2018.11.009. Epub 2018 Dec 28.
10
[Health and socio-educational needs of the families and children with rare metabolic diseases: Qualitative study in a tertiary hospital].[罕见代谢疾病家庭及儿童的健康与社会教育需求:三级医院的定性研究]
An Pediatr (Engl Ed). 2019 Jan;90(1):42-50. doi: 10.1016/j.anpedi.2018.03.003. Epub 2018 May 28.

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.

DOI:10.1016/j.ymgmr.2024.101082
PMID:39309543
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11412921/
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。