成人慢性肠功能衰竭和短肠综合征:葡萄牙卫生系统的原则和前景

F. Vara-Luiz, Luísa Glória, I. Mendes, S. Carlos, Paula Guerra, G. Nunes, Cátia Sofia Oliveira, Andreia Ferreira, Ana Paula Santos, J. Fonseca
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引用次数: 0

摘要

背景:短肠综合征是一种破坏性吸收不良病症,也是慢性肠功能衰竭(CIF)最常见的病因。患者需要数月或数年的肠外支持。理想情况下,患者应在家中接受治疗,以减少日常生活活动的限制。摘要:葡萄牙第 017/2020 号卫生指令是规范家庭 CIF 管理的第一步,现在越来越多的患者在非卧床环境下接受治疗。然而,这方面仍有许多工作要做。我国缺乏能够提供家庭肠外营养(HPN)的单位网络,只有少数几个中心具备护理这些复杂病人的专业知识:液体支持、口服、肠内和肠外营养;疾病/HPN 相关并发症;药物治疗;以及手术预防/治疗。提供从儿科到成人护理的适当过渡是一个必须解决的问题,只有专家中心才能解决这个问题。关键信息:建立一个全国性网络并创建一个肠道功能衰竭登记处(最初以成人患者为重点),将开启识别和管理这些复杂的 CIF 患者的新时代。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Chronic Intestinal Failure and Short Bowel Syndrome in Adults: Principles and Perspectives for the Portuguese Health System
Background: Short bowel syndrome is a devastating malabsorptive condition and the most common cause of chronic intestinal failure (CIF). Patients need parenteral support for months or years. Ideally, it should be delivered at home, reducing limitations in everyday life activities. Summary: The Portuguese Health Directive 017/2020 was the first step in the regulation of home CIF management, and more patients are now being treated in an ambulatory setting. However, much work still needs to be performed in this area. Our country lacks a network of units capable of providing home parenteral nutrition (HPN), and only a few centers have expertise to take care of these complex patients: fluid support, oral, enteral, and parenteral nutrition; disease/HPN-related complications; pharmacologic treatment; and surgical prevention/treatment. Providing adequate transition from pediatric to adult care is a mandatory issue that should only be addressed by expert centers. Key Messages: Implementation of a national network, as well as the creation of an intestinal failure registry, with an initial focus on adult patients, will start a new era in the identification and management of these complex CIF patients.
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