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Abstract：
BACKGROUND: 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.
CONCLUSIONS: 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.
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.
CONCLUSIONS: 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：
背景：家庭肠外营养（HPN）是慢性肠衰竭患者的主要治疗方式，最不常见的器官衰竭之一。本文对捷克共和国过去30年中收集的HPN患者的数据进行了回顾性分析。
方法：国家注册数据是使用基于OASIS注册（Oley-A.S.P.E.N.InformationSystem）的标准化在线表格在捷克共和国提供HPN的所有中心收集的。从HPN计划中的成年患者中收集的前瞻性数据被分析为以下类别：流行病学，人口统计，潜在综合征，和诊断，并发症,和teduglutide治疗的患病率。
结果：注册表确定了总共1,838个成人患者记录，反映了近150万个人导管日。在过去的几十年中，HPN的患病率大幅上升，目前达到每10万人口5.5。大多数患者有短肠综合征和胃肠道梗阻，癌症是最普遍的潜在疾病。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0.15/1,000导管日.该研究还观察到在过去十年中姑息性HPN患者的患病率增加。
结论：本研究对捷克REDNUP注册数据进行了全面分析。它显示HPN的患病率增加，即姑息患者组。国家数据的共享可以增进对这种罕见情况的了解，并促进国际准则的制定。
方法：国家注册数据是使用基于OASIS注册（Oley-A.S.P.E.N.InformationSystem）的标准化在线表格在捷克共和国提供HPN的所有中心收集的。从HPN计划中的成年患者中收集的前瞻性数据被分析为以下类别：流行病学，人口统计，潜在综合征，和诊断，并发症,和teduglutide治疗的患病率。
结果：注册表确定了总共1,838个成人患者记录，反映了近150万个人导管日。在过去的几十年中，HPN的患病率大幅上升，目前达到每10万人口5.5。大多数患者有短肠综合征和胃肠道梗阻，癌症是最普遍的潜在疾病。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0.15/1,000导管日.该研究还观察到在过去十年中姑息性HPN患者的患病率增加。
结论：本研究对捷克REDNUP注册数据进行了全面分析。它显示HPN的患病率增加，即姑息患者组。国家数据的共享可以增进对这种罕见情况的了解，并促进国际准则的制定。
