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Published on: September 20, 2019
Travelling With Children on Home Parenteral Nutrition
Cecilia Mantegazza1, Vanessa La Vela, Susan Hill
1Department of Paediatric Gastroenterology, Division of Nutrition and Intestinal Rehabilitation, Great Ormond Street Hospital for Children, London, United Kingdom.
Insights
Most families with children on home parenteral nutrition (HPN) successfully travel for holidays. Despite challenges like transporting nutrition supplies, the travel experience is generally positive, encouraging future trips.
Area of Science:
- Pediatric Gastroenterology
- Home Healthcare
- Parenteral Nutrition
Background:
- Home parenteral nutrition (HPN) is a vital therapy for pediatric intestinal failure.
- While enabling daily activities, HPN can impose travel restrictions on families.
- Understanding travel barriers and facilitators for these families is crucial.
Purpose of the Study:
- To identify factors influencing travel decisions and experiences for children on HPN.
- To explore reasons for not travelling and gather insights from families who have travelled.
Main Methods:
- A survey was distributed to 40 children on HPN at a UK tertiary center.
- Questionnaires addressed travel history, reasons for not travelling, and travel experiences.
- Data collection focused on sociodemographic and illness-specific variables.
Main Results:
- 20 out of 30 enrolled children travelled on holiday, with 5 travelling annually.
- Longer duration on HPN correlated positively with travel frequency (P=0.022).
- The primary obstacle was transporting parenteral nutrition (PN) bags; 10 families did not travel due to logistical fears or medical instability.
Conclusions:
- A substantial number of families travel with children on HPN.
- The majority of travel experiences were reported as positive.
- Most families would travel again, indicating feasibility and benefit despite challenges.
Background:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
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