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.
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".
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”。
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