肠衰竭和小肠移植全国多中心登记研究介绍

Clin Nutr. 2016 Feb;35(1):225-9.

Presentation of a nationwide multicenter registry of intestinal failure and intestinal transplantation.

Neelis EG, Roskott AM, Dijkstra G, Wanten GJ, Serlie MJ, Tabbers MM, Damen G, Olthof ED, Jonkers CF, Kloeze JH, Ploeg RJ, Imhann F, Nieuwenhuijs VB, Rings EH.

University Medical Center Groningen, Beatrix Children's Hospital, Post Office Box 30.001, 9700 RB, Groningen, The Netherlands; Erasmus Medical Center-Sophia Children's Hospital, Post Office Box 2060, 3000 CB, Rotterdam, The Netherlands; Radboud University Medical Center, Post Office Box 9101, 6500 HB, Nijmegen, The Netherlands; Academic Medical Center, Emma Children's Hospital, Post Office Box 22660, 1100 DD, Amsterdam, The Netherlands; Nuffield Department of Surgical Sciences, University of Oxford, OX37DQ, Oxford, United Kingdom; Healthcare IT Developer, Aceso BV, De Deimten 11, 9747 AV, Groningen, The Netherlands; Isala Clinics, Post Office Box 10400, 8000 GK, Zwolle, The Netherlands; Leiden University Medical Center, Willem Alexander Children's Hospital, Post Office Box 9600, 2300 RC, Leiden, The Netherlands.

BACKGROUND & AIMS: Exact data on Dutch patients with chronic intestinal failure (CIF) and after intestinal transplantation (ITx) have been lacking. To improve standard care of these patients, a nationwide collaboration has been established. Objectives of this study were obtaining an up-to-date prevalence of CIF and characterizing these patients using the specially developed multicenter web-based Dutch Registry of Intestinal Failure and Intestinal Transplantation (DRIFT).

METHODS: Cross-sectional study. CIF was defined as type 3 intestinal failure in which >75% of nutritional requirements were given as home parenteral nutrition (HPN) for ≥ 4 weeks in children and >50% for ≥3 months in adults. All patients with CIF receiving HPN care by the three Dutch specialized centers on January 1, 2013 and all ITx patients were registered in DRIFT (https://drift.darmfalen.nl).

RESULTS: In total, 195 patients with CIF (158 adults, 37 children) were identified, of whom 184 were registered in DRIFT. The Dutch point prevalence of CIF was 11.62 per million (12.24 for adults, 9.56 for children) on January 1, 2013. Fifty-seven patients (31%) had one or more indications for ITx, while 12 patients actually underwent ITx since its Dutch introduction. Four patients required transplantectomy of their intestinal graft and 3 intestinal transplant patients died.

CONCLUSION: The multicenter registry DRIFT revealed an up-to-date prevalence of CIF and provided nationwide insight into the patients with CIF during HPN and after ITx in the Netherlands. DRIFT will facilitate the multicenter monitoring of individual patients, thereby supporting multidisciplinary care and decision-making.

KEYWORDS: Home parenteral nutrition; Intestinal failure; Intestinal transplantation

PMID: 25660415

DOI: 10.1016/j.clnu.2015.01.010