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捷克家庭肠外营养注册中心 REDNUP:成人患者数据的综合分析。

The Czech Home Parenteral Nutrition Registry REDNUP: Comprehensive Analysis of Adult Patients' Data.

机构信息

Internal Department of Third Faculty of Medicine and Královské Vinohrady University Hospital, Charles University Prague, Prague, Czechia.

Department of Anaesthesia and Intensive Care of The Third Faculty of Medicine and Královské Vinohrady University Hospital, Charles University, Prague, Czechia.

出版信息

Ann Nutr Metab. 2024;80(3):143-152. doi: 10.1159/000538232. Epub 2024 Mar 12.

Abstract

INTRODUCTION

Home parenteral nutrition (HPN) is the primary treatment modality for patients with chronic intestinal failure, one of the least common organ failures. This article provides a retrospective analysis of the data collected on HPN patients in the Czech Republic over the past 30 years.

METHODS

National registry data were collected using a standardised online form based on the OASIS registry (Oley - A.S.P.E.N. Information System) across all centres providing HPN in the Czech Republic. Data collected prospectively from adult patients in the HPN program were analysed in the following categories: epidemiology, demographics, underlying syndrome, diagnosis, complications, and teduglutide therapy prevalence.

RESULTS

The registry identified a total of 1,838 adult patient records, reflecting almost 1.5 million individual catheter days. The prevalence of HPN has risen considerably over the last few decades, currently reaching 5.5 per 100,000 population. The majority of patients have short bowel syndrome and GI obstruction, with cancer being the most prevalent underlying disease. Catheter-related bloodstream infections have been the most prevalent acute complication. However, the incidence in 2022 was only 0.15 per 1,000 catheter days. The study also observed an increase in the prevalence of patients on palliative HPN over the last decade.

CONCLUSION

This study presents a thorough analysis of data from the Czech REgistr Domaci NUtricni Podpory (REDNUP) registry. It shows an increasing prevalence of HPN, namely, in the palliative patient group. The sharing of national data can improve understanding of this rare condition and facilitate the development of international guidelines.

摘要

简介

家庭肠外营养(HPN)是慢性肠衰竭患者的主要治疗方式,而慢性肠衰竭是最罕见的器官衰竭之一。本文对过去 30 年来捷克共和国 HPN 患者的数据进行了回顾性分析。

方法

通过标准化的在线表格,使用 OASIS 注册系统(Oley - A.S.P.E.N. Information System)在捷克共和国所有提供 HPN 的中心收集国家注册数据。对 HPN 项目中成年患者的前瞻性数据进行了以下分类分析:流行病学、人口统计学、潜在综合征、诊断、并发症和 teduglutide 治疗的流行率。

结果

该注册共确定了 1838 名成年患者的记录,反映了近 150 万例个体导管日。在过去几十年中,HPN 的患病率显著上升,目前达到每 10 万人中有 5.5 例。大多数患者患有短肠综合征和胃肠道梗阻,癌症是最常见的潜在疾病。导管相关血流感染是最常见的急性并发症。然而,2022 年的发病率仅为每 1000 个导管日 0.15 例。该研究还观察到过去十年中姑息性 HPN 患者的患病率有所增加。

结论

本研究对捷克 REgistr Domaci NUtricni Podpory(REDNUP)注册中心的数据进行了全面分析。结果表明,HPN 的患病率,尤其是姑息性患者群体的患病率在增加。分享国家数据可以提高对这种罕见疾病的认识,并促进国际指南的制定。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d57a/11152004/0f0821a70160/anm-2024-0080-0003-538232_F01.jpg

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