Introduction Home parenteral nutrition (PN) is a well established therapy in children with intestinal failure. Modern PN management allows most paediatric patients to participate in age appropriate activities such as physcial exercise, play and mainstream education. Spending time away from home and going on holiday may be limited as the intravenous nutrition is infused over many hours on most if not all days of the week. We aimed to identify socio-demographic and illness-specific variables which influence if and how families with children on home PN travel.
Method A standardised questionnaire together with an information leaflet was sent to all 40 children participating in the home PN program of a large tertiary centre intestinal failure unit in the United Kingdom and written consent was obtained at the next outpatient clinic visit. Depending on whether the family had/had not been on holiday since their child had been started on home PN specific questions were asked to understand the reasons for not travelling or to get more information about the individual travel experience.
Results A total of 30/40 (75%) children were enrolled, 20/30 (66.6%) went at least once on holiday and 5/30 (16.6%) travelled more than once per year. The majority (14/30; 70%) travelled to destinations outside Britain. Going on vacation was more common the longer the child had been on home PN (travellers: median 48 months/ non travellers: median 30 months, p 0.022). However, there was no association with the length of time tolerated without PN, tolerance of enteral feeds or child’s age. Ten families decided against a holiday over fear it might be too difficult to arrange or the child’s unstable underlying medical condition. Most parents who went on vacation had a good or worthy experience (16/20; 80%) and the majority wanted to travel again (19/20; 95%). The biggest obstacle to overcome reported was to transport the intravenous nutrition bags due to their weight and required storage space.
Conclusion A significant proportion of families chose to go on holiday away from home despite their child being on home PN. The experience is considered good by most which can help to encourage other parents in the future.
Disclosure of interest None Declared.
PINNT Holiday Guidelines: Travelling with Parenteral or Enteral Nutrition Therapy, http://pinnt.com/Support-for-Members.aspx
Barclay AR, Henderson P, Gowen H, Puntis J, BIGS collaborators. The continued rise of paediatric home parenteral nutrition use: Implications for service and the improvement of longitudinal data collection. Clin Nutr2014 Nov 20 pii: S0261-5614(14)00290–8