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

• Published in: Clinical nutrition (Edinburgh, Scotland) Vol. 35; no. 1; pp. 225 - 229
• Main Authors: Neelis, E.G, Roskott, A.M, Dijkstra, G, Wanten, G.J, Serlie, M.J, Tabbers, M.M, Damen, G, Olthof, E.D, Jonkers, C.F, Kloeze, J.H, Ploeg, R.J, Imhann, F, Nieuwenhuijs, V.B, Rings, E.H.H.M
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.02.2016
• Subjects: Adult; Child; Chronic Disease; Cross-Sectional Studies; Female; Gastroenterology and Hepatology; Home parenteral nutrition; Humans; Internet; Intestinal Diseases - epidemiology; Intestinal Diseases - surgery; Intestinal failure; Intestinal transplantation; Intestines - physiopathology; Intestines - transplantation; Male; Netherlands - epidemiology; Nutritional Requirements; Organ Transplantation; Parenteral Nutrition, Home; Postoperative Complications - therapy; Prevalence; Registries; CIF; Intestinal failure; HPN; ESPGHAN; Dutch Registry of Intestinal Failure and Intestinal Transplantation; central venous catheter; Home parenteral nutrition; ITx; DRIFT; catheter-related bloodstream infection; CVC; Intestinal transplantation; parenteral nutrition; chronic and/or irreversible intestinal failure; European Society for Pediatric Gastroenterology, Hepatology and Nutrition; CIPO; chronic intestinal pseudo-obstruction; IF; PN; CRBSI
• ISSN: 0261-5614; 1532-1983
• DOI: 10.1016/j.clnu.2015.01.010

Summary 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.