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Palliative medicine and ethics and law forum joint session

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G233 INTESTINAL FAILURE: CHANGING PATTERNS OF PRESENTATION, MANAGEMENT, AND LONG-TERM OUTCOMES OF PATIENTS OVER 8 YEARS IN A REGIONAL CENTRE WITH COMPLETE CASE REFERRAL

A. R. Barclay1, C. E. Paxton1, A. Coates2, P. M. Gillett1, D. Hoole2, J. Livingstone2, G. Menon3, F. Munro4, D. C. Wilson1.1Department of Paediatirc Gastroenterology Royal Hospital for Sick Children, Edinburgh, UK; 2Nutrition Support Team, Royal Hospital for Sick Children, Edinburgh, UK; 3Department of Neonatology, Simpson’s Memorial Maternity Pavillion, Royal Infirmary of Edinburgh, Scotland, UK; 4Department of Paediatric Surgery, Royal Hospital for Sick Children, Edinburgh, UK

Background: The long term outcome for intestinal failure has been dramatically improved by parenteral nutrition, which allows growth while awaiting bowel adaptation or definitive treatment (small bowel transplantation). Recurrent bacterial sepsis and parenteral nutrition -associated cholestasis (PNAC) contribute to long term morbidity and mortality in intestinal failure. Few UK data exist as to long term survival and outcomes in this patient group in the post- parenteral nutrition era.

Aims: To describe the long term outcome and survival of patients referred to the intestinal failure team over the first 8 years of its existence at a regional paediatric centre with complete case referral for prolonged parenteral nutrition post-corrected age of term and serving a population of 1.25 million people.

Methods: Retrospective case note analysis detailing patient demographics; diagnosis; surgery, bowel length, ileo-caecal valve (ICV) removal; parenteral nutrition, septic episodes, central line removal; PNAC, referral for transplantation; enteral adaptation; survival, death and organ transplantation.

Results: 23 patients were referred over 8 years, with all but 3 being parenteral nutrition dependent from birth. Diagnosis included short bowel syndrome (SBS) (18), neuromuscular abnormalities (4), and congenital enterocyte disorder (1). 12 696 days of parenteral nutrition were delivered with 314 confirmed episodes of central line sepsis (Coag neg staph 43%, Gram negatives 45%) with an average …

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