Patient-reported barriers to travel in adults on home parenteral support

Abstract

Background: Home parenteral support (HPS) is first-line therapy for patients with chronic intestinal failure (IF). HPS typically involves 12-hour infusions for between one and seven nights per week and adversely affects patients' quality of life (QoL)1. Whilst the impact of HPS upon travel in families with children on HPS has been explored2, the effect on adult patients on HPS is not known. Aim(s): To describe patient-reported barriers to travelling amongst adults on HPS. Method(s): Patients attending outpatient IF clinic were invited to participate. Patients >16 years on HPS, including intravenous nutrition and/or fluids, were included. Patients with advanced cancer were excluded. Patients were given a selection of statements relating to psychological capability, physical capability, physical opportunity, social opportunity and motivation with answers recorded on a 5-point Likert scale. Result(s): Thirty patients participated (22 females, 8 males; age range 16 to 80 years). Eighteen (60%) had been on HPS for >5 years (median duration 8 years) and 19 (63%) were infusing 3-6 days per week. The most common IF aetiology was Crohn's disease. Seventeen (57%) had travelled abroad since commencing HPS. Four (13%) thought sufficient information on travel was available. Eighteen (60%) felt their venous catheter restricted holiday activities, including swimming. Twelve (40%) felt their underlying condition prevented travel. Twenty-eight (93%) felt they were unable to travel abroad at short notice. Nine (30%) felt that airlines and airports did not cater for their needs, with 15 (50%) not considering air travel since commencing HPS. Twelve (40%) felt it was more expensive to travel because of HPS with 9 (30%) unable to obtain suitable travel insurance. Sixteen (53%) felt HPS was a burden on travel companions. Twenty-four (80%) felt their HPN team were supportive of travel, but 10 (33%) felt their team could do more to help facilitate travel. Twenty-three (77%) worried they would be unable to access healthcare abroad, with 22 (73%) feeling safer holidaying within the UK. Twenty-six (87%) agreed that travel is important for wellbeing, but only twelve (40%) felt confident travelling. Conclusion(s): Travel is important to our HPS patients, yet the majority do not feel confident or have access to adequate information resources. The concept of travel should be discussed during initial HPS set-up and written information provided, with a particular focus on swimming, air travel, insurance and seeking medical assistance abroad. Patients should be signposted to relevant online resources for support. References 1. Jones D, Lal S, French C. Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study. Nutrients. 2023 Jan 25;15(3):622. 2. Mantegazza C, La Vela V, Hill S. Travelling with children on home parenteral nutrition. JPGN. 2016 Jan 1;62(1):145-149. Copyright © 2025