Intestinal failure (IF) occurs when the small intestine is too short or dysfunctional and cannot absorb enough nutrients and fluids. Since these nutrients and fluids are crucial for children to grow and develop, children with IF are dependent on nutrition directly administered intravenously, called parenteral nutrition (PN). This can be given at home as home PN (HPN). Over the last decades, the survival of patients with IF has improved tremendously, which has made the long-term outcomes and quality of life of patients with IF increasingly important. While complications such as line sepsis and liver failure are less common than before, long-term morbidities of IF such as poor bone health, abnormal body composition and psychosocial problems may arise. These are, however, currently not well explored. Additionally, information on organizational aspects including the current organization and clinical practice of pediatric IF teams, as well as the costs of care for children with IF is lacking. In this thesis we focus on outcomes of IF patients such as growth, body composition, bone health and the gut microbiome, as well as organizational aspects important in the care of these patients.

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Keywords intestinal failure, short bowel syndrome, parenteral nutrition, growth, body composition, bone health, microbiome, quality of life, intestinal adaptation.
Promotor E.H.H.M. Rings (Edmond) , R.M.H. Wijnen (René) , J.M. Hulst (Jessie)
Publisher Erasmus University Rotterdam
Sponsor The study described in Chapter 7 in this thesis was supported by Stichting Zeldzame Ziekten Fonds.
ISBN 978-94-6361-313-2
Persistent URL
Note For copyright reasons there is a partial embargo for this dissertation
Neelis, E.G. (2019, October 30). Optimizing Care for Children With Intestinal Failure: The gut and beyond. Erasmus University Rotterdam. Retrieved from