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Outcome of children with chronic intestinal failure up to 20 years after discharge home on treatment with intravenous/parenteral nutrition (PN)
  1. S M Hill1,
  2. S Macdonald2,
  3. J Brind1,
  4. V Horn1
  1. 1Gastroenterology, Great Ormond Street Hospital, London, UK
  2. 2Dietetics, Great Ormond Street Hospital, London, UK
  3. 4Pharmacy, Great Ormond Street Hospital, London, UK

Abstract

Aims To review outcome in children with severe intestinal failure discharged home on parenteral nutrition (PN) treatment administered by parents.

Methods All children discharged home on PN treatment since 1986 were reviewed. Primary diagnosis leading to intestinal failure, age, sex and outcome (1. recovered intestinal function and weaned off PN, 2. remained on treatment, 3. death) were recorded.

Results 122 children, 63 male, 59 female were discharged home. Diagnoses were, short gut in 41 cases, enteropathy in 58 cases and motility disorder in 23. Children were aged from 2–27 years when reviewed and there were a total of 1150 years since start of treatment. Overall there was an 89% 1-year, 85% 2-year, 79% 5-year, 72% 10-year and 66% 20-year survival rate. 50% of children had weaned from PN within 5 years of commencing treatment. Children with short gut were more likely to regain intestinal function by 5 years in that 76% had weaned compared to 52% of those with other diagnoses.

Conclusions Children with severe intestinal failure can survive for years on treatment with intravenous nutrition/PN with care by parents with a 72% 10 year survival rate. The best outcome was associated with short gut.

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