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Long-term follow-up of patients on home parenteral nutrition in Europe: implications for intestinal transplantation
  1. Loris Pironi1,
  2. Francisca Joly2,
  3. Alastair Forbes3,
  4. Virginie Colomb4,
  5. Malgorzata Lyszkowska5,
  6. Janet Baxter6,
  7. Simon Gabe7,
  8. Xavier Hébuterne8,
  9. Manuela Gambarara9,
  10. Frederic Gottrand10,
  11. Cristina Cuerda11,
  12. Paul Thul12,
  13. Bernard Messing2,
  14. Olivier Goulet4,
  15. Michael Staun13,
  16. André Van Gossum14,
  17. Home Artificial Nutrition & Chronic Intestinal Failure Working Group of the European Society for Clinical Nutrition and Metabolism (ESPEN)
  1. 1Center for Chronic Intestinal Failure, Department of Gastroenterology and Internal Medicine, University of Bologna, Italy
  2. 2Department of Gastroenterology and Nutritional Support, Pôle des Maladies de l'Appareil Digestif, Hôpital Beaujon, Clichy, France
  3. 3Centre for Gastroenterology and Nutrition, University College London, London, UK
  4. 4Pediatric Gastroenterology and Nutrition, Necker-Enfants Malades Hospital, Paris Descartes University, Paris France
  5. 5Department of Paediatric Surgery and Organ Transplantation, The Children's Memorial Health Institute, Warsaw, Poland
  6. 6Ninewells Hospital and Medical School, Dundee, UK
  7. 7St. Mark's Hospital, Harrow, Middlesex, UK
  8. 8Department of Gastroenterology and Clinical Nutrition, CHU of Nice, University of Nice Sophia-Antipolis, Nice, France
  9. 9Gastroenterology and Nutrition Unit, Ospedale Pediatrico Bambino Gesù, Roma, Italy
  10. 10Département de Gastroentérologie, Hépatologie et Nutrition Pédiatrique, Hôpital J de Flandre, CHRU de Lille, Université de Lille2, France
  11. 11Hospital General Universitario Gregorio Marañón, Madrid, Spain
  12. 12Department of Surgery, Charité University Hospital, Berlin, Germany
  13. 13Department of Gastroenterology, Rigshospitalet, Copenhagen, Denmark
  14. 14Medico-Surgical Department of Gastroenterology, Hôpital Erasme, Free University of Brussels, Belgium
  1. Correspondence to Dr Loris Pironi, Center for Chronic Intestinal Failure, Department of Gastroenterology and Internal Medicine, St. Orsola-Malpighi Hospital, University of Bologna, Via Massarenti, 9-40138 Bologna, Italy; loris.pironi{at}unibo.it

Abstract

Background The indications for intestinal transplantation (ITx) are still debated. Knowing survival rates and causes of death on home parenteral nutrition (HPN) will improve decisions.

Methods A prospective 5-year study compared 389 non-candidates (no indication, no contraindication) and 156 candidates (indication, no contraindication) for ITx. Indications were: HPN failure (liver failure; multiple episodes of catheter-related venous thrombosis or sepsis; severe dehydration), high-risk underlying disease (intra-abdominal desmoids; congenital mucosal disorders; ultra-short bowel), high morbidity intestinal failure. Causes of death were defined as: HPN-related, underlying disease, or other cause.

Results The survival rate was 87% in non-candidates, 73% in candidates with HPN failure, 84% in those with high-risk underlying disease, 100% in those with high morbidity intestinal failure and 54%, in ITx recipients (one non-candidate and 21 candidates) (p<0.001). The primary cause of death on HPN was underlying disease-related in patients with HPN duration ≤2 years, and HPN-related in those on HPN duration >2 years (p=0.006). In candidates, the death HRs were increased in those with desmoids (7.1; 95% CI 2.5 to 20.5; p=0.003) or liver failure (3.4; 95% CI 1.6 to 7.3; p=0.002) compared to non-candidates. In deceased candidates, the indications for ITx were the causes of death in 92% of those with desmoids or liver failure, and in 38% of those with other indications (p=0.041). In candidates with catheter-related complications or ultra-short bowel, the survival rate was 83% in those who remained on HPN and 78% after ITx (p=0.767).

Conclusions HPN is confirmed as the primary treatment for intestinal failure. Desmoids and HPN-related liver failure constitute indications for life-saving ITx. Catheter-related complications and ultra-short bowel might be indications for pre-emptive/rehabilitative ITx. In the early years after commencing HPN a life-saving ITx could be required for some patients at higher risk of death from their underlying disease.

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Footnotes

  • Competing interests None.

  • Ethics approval Not required. The questionnaire used in this study was completed for each individual patient by the local medical team in anonymised form, codified for linkage with previous years' data. The research was thus based on information taken from that already present in the patient records at the time of the data collection. The study was conducted with full regard to confidentiality and protection of the individual patient.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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