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本文引用的文献

1
Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study.探索儿科重症监护病房住院期间患有慢性重病儿童的父母照顾者的体验:一项解释性描述性研究。
BMC Pediatr. 2019 Aug 6;19(1):272. doi: 10.1186/s12887-019-1634-0.
2
Understanding the Needs of Children With Medical Complexity.了解患有复杂疾病儿童的需求。
MedEdPORTAL. 2018 Apr 20;14:10709. doi: 10.15766/mep_2374-8265.10709.
3
Neonatologists' preferences regarding guidelines for periviable deliveries: do we really know what we want?围产儿医学专家对极早产儿分娩指南的偏好:我们真的知道自己想要什么吗?
J Perinatol. 2019 Mar;39(3):445-452. doi: 10.1038/s41372-019-0313-1. Epub 2019 Jan 18.
4
Preterm Birth and Risk of Heart Failure Up to Early Adulthood.早产与直至成年早期的心力衰竭风险
J Am Coll Cardiol. 2017 Oct 10;70(15):1943-1944. doi: 10.1016/j.jacc.2017.06.074.
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Fetal programming of neuropsychiatric disorders.神经精神疾病的胎儿编程
Birth Defects Res C Embryo Today. 2016 Sep;108(3):207-223. doi: 10.1002/bdrc.21139. Epub 2016 Oct 24.
6
Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis.评估全球儿童姑息治疗需求:一项横断面分析。
J Pain Symptom Manage. 2017 Feb;53(2):171-177. doi: 10.1016/j.jpainsymman.2016.08.020. Epub 2016 Oct 17.
7
Ways to Identify Children with Medical Complexity and the Importance of Why.识别患有复杂疾病儿童的方法以及其重要性的原因
J Pediatr. 2015 Aug;167(2):229-37. doi: 10.1016/j.jpeds.2015.04.068. Epub 2015 May 28.
8
Prolonging nephrogenesis in preterm infants: a new approach for prevention of kidney disease in adulthood?延长早产儿的肾发生:预防成年期肾病的新方法?
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Children with medical complexity and Medicaid: spending and cost savings.患有复杂疾病的儿童与医疗补助计划:支出与成本节约
Health Aff (Millwood). 2014 Dec;33(12):2199-206. doi: 10.1377/hlthaff.2014.0828.
10
Patterns and costs of health care use of children with medical complexity.儿童医疗复杂性患者的医疗保健使用模式和费用。
Pediatrics. 2012 Dec;130(6):e1463-70. doi: 10.1542/peds.2012-0175. Epub 2012 Nov 26.

患有复杂疾病的儿童。

The child with medical complexity.

机构信息

Università degli Studi di Cagliari, Cagliari, Italy.

Area Pediatria e Neonatologia della Asl Toscana Centro (Firenze), Florence, Italy.

出版信息

Ital J Pediatr. 2021 Jan 6;47(1):1. doi: 10.1186/s13052-020-00935-z.

DOI:10.1186/s13052-020-00935-z
PMID:33407754
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7788740/
Abstract

Children with medical complexity represent a big challenge for the physicians, their families and the society as well. Although there is no clear definition of this type of patients, they are affected by a chronic, often very severe condition for their whole life. They also represent a huge cost for the health care system due to their needs of continuous assistance.In this review we summarized the definitions of child with medical complexity. Then we illustrated the strategies to treat and take care of these children in order to look at them not as a burden or a cost but as an opportunity to growth and improve as clinicians and to improve the society, to give them the best life they can live.We also wanted to give voice to the physicians, the parents and the children themselves to really show and understand what are their experiences and their feelings in dealing with their conditions. We concluded with the description of one example of children with medical complexity: prematurity. We discussed the progresses in their treatment so far in order to illustrate what is the future of pediatrics. Since it has been more and more acknowledged that every child with medical complexity is unique, the future of pediatric is to organize an individualized approach and to "see things with the eye of a child".

摘要

患有复杂疾病的儿童给医生、他们的家庭和整个社会带来了巨大的挑战。尽管目前对于这类患者还没有明确的定义,但他们的一生都会受到慢性、通常非常严重疾病的影响。由于他们需要持续的帮助,他们也给医疗保健系统带来了巨大的负担。在这篇综述中,我们总结了患有复杂疾病的儿童的定义。然后,我们阐述了治疗和照顾这些儿童的策略,以便将他们视为成长和提高临床医生水平以及改善社会的机会,让他们过上尽可能好的生活。我们还希望为医生、家长和儿童自己发声,真正展示和理解他们在应对自身状况时的经历和感受。我们以患有复杂疾病的儿童的一个例子——早产儿为例,结束了这篇综述。我们讨论了迄今为止在他们的治疗方面所取得的进展,以说明儿科的未来发展方向。由于人们越来越认识到,每个患有复杂疾病的儿童都是独特的,儿科的未来在于组织个性化的治疗方法,并“用孩子的眼光看问题”。