Home parenteral nutrition in children Treatment, complications and patient reported outcomes

Chronic pediatric intestinal failure is a rare and heterogeneous condition characterized by the inability of the patients gut to adequately absorb the required nutrients for growth and homeostasis. As a result, patients will become dependent on home parenteral nutrition. Goal of treatment in chronic intestinal failure is to wean patients from parenteral nutrition and achieve enteral autonomy whilst ensuring growth and homeostasis, and preventing the development of complications.
This thesis focused on several aspects of intestinal failure management. (1) A literature study on the effect of two types of surgical bowel lengthening procedures in short bowel syndrome. (2) A study evaluating the effect of two types of parenteral nutrition; individualized prescriptions or standardized prescriptions. (3) A study on non-invasive monitoring of intestinal failure-associated liver disease and liver fibrosis. (4) Prevention of catheter-related thrombosis by prescribing primary prophylactic anticoagulation. (5) the longitudinal development of health related quality of life and fatigue in children suffering from chronic intestinal failure. And (6) a literature study on the used definitions of intestinal failure and reported outcomes in pediatric intestinal failure research with the aim of developing a core outcome set.
All studies in this thesis serve as pilot studies providing information which can guide future research in chronic intestinal failure in children on home parenteral nutrition.