Dutch Registry of Intestinal Failure and Intestinal Transplantation

Neelis, E.G. (2013) Dutch Registry of Intestinal Failure and Intestinal Transplantation. thesis, Medicine.

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Abstract

Background: Intestinal failure (IF) is characterised by an inadequate absorption of food to maintain the function and integrity of the body. Causes of IF can be classified into anatomical (short bowel syndrome) or functional (motility disorder or enteropathy). Patients with intestinal failure depend on total parenteral nutrition (TPN) to survive, which can be provided at home (HPN) in case of chronic and/or irreversible intestinal failure (CIF). Survival on TPN is better than after intestinal transplantation (ITx), therefore ITx is only offered to patients when TPN fails. Early referral to the transplant center is essential, therefore a good multidisciplinary collaboration between the centers for HPN and the transplantation center is necessary, including an up to date overview of the individual patient. To date, this overview is lacking in the Netherlands. Therefore, the Dutch working group for IF, has developed the Dutch Registry of Intestinal failure and Intestinal Transplantation (DRIFT). The aim of this multicentre cross-sectional study was to register and describe all Dutch CIF patients. Methods: DRIFT is an online, web-based database in English language. Demographic and clinical data of all patients were registered on January 1, 2013. CIF was defined as a condition in which more than 75% of nutritional needs are given as TPN for at least 4 weeks in children and more than 50% for at least 3 months in adults. Results: HPN in the Netherlands is almost exclusively provided by two tertiary HPN-centres for adults and children. In total, 173 patients (147 adults, 26 children) with CIF received HPN on January 1, 2013, providing a point prevalence of 10.3 per million inhabitants. Among these patients were 110 females (64%) and 63 males (36%). The underlying diseases were short bowel syndrome (n = 85, 49%), motility disorder (n = 73, 42%) or enteropathy (n = 15, 9%). The median duration on TPN was 2.92 years for adults and 4.16 years for children. Over the last year, 43.5% of the adults and 38.5% of the children were admitted at least once because of TPN-related problems. In addition, 12.1% and 26.6% of the patients had at least one line occlusion and line sepsis in 2012, respectively. Abnormal liver enzymes (ALP and γ-GT ≥ 1.5 x the reference range) were found in 13.9% of the patients and decreased bone density in at least 75.9% of the adults and 61.5% of the children. In total, 57 patients met the criteria to screen for ITx. Since 2001, 12 patients (7 adults, 5 children) underwent ITx in the Netherlands. The underlying diseases were short bowel syndrome (n = 7, 58%), enteropathy (n = 3, 25%) or motility disorder (n = 2, 17%). Four patients (33.3%) had rejection followed by enterectomy of the transplant. On January 1, 2013, 9 patients (75%) were still alive, of which six (50%) with a functioning graft. Conclusion: An accurate registration of patients with CIF during HPN and after ITx in the Netherlands is now available. The point prevalence of patients with CIF on HPN was 10.3 per million inhabitants. ITx was performed in 12 patients (13 grafts) over a period of 12 years.

Item Type:	Thesis (Thesis)
Supervisor name:	Rings, Prof. E.H.H.M.
Faculty:	Medical Sciences
Date Deposited:	25 Jun 2020 11:01
Last Modified:	25 Jun 2020 11:01
URI:	https://umcg.studenttheses.ub.rug.nl/id/eprint/2124

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