Travelling With Children on Home Parenteral Nutrition.

Home parenteral nutrition (HPN) is an established therapy in children with intestinal failure. Parenteral nutrition (PN) management allows most paediatric patients to participate in age-appropriate activities; however, HPN may lead to significant restrictions, particularly going on holiday. We aimed to identify sociodemographic and illness-specific variables that influence if and how families with children on HPN travel. A standardised questionnaire was sent to all 40 children on HPN within a large tertiary intestinal failure centre in the United Kingdom. Depending on whether the family had/had not been on holiday since their child had started HPN, questions were asked to understand the reasons for not travelling or to gather information about individual travel experiences. A total of 30 children were enrolled, 20 of 30 went at least once on holiday, and 5 of 30 travelled more than once per year, 70% travelled outside Britain. Going on vacation was more common, the longer the child had been on HPN (P = 0.022); hours spent on PN tolerance of enteral feeds or the child's age did not influence travel behaviour; 80% of parents who went on vacation had a good/worthy experience, 95% would travel again. The biggest reported obstacle was the transportation of PN bags. Ten families sacrificed a holiday over fear that it may be difficult to arrange or because of the child's unstable medical condition. A significant proportion of families chose to go on holiday away from home despite their child being on HPN. The experience is considered good by most.