Patient experience and resource use analysis of balloon-retained vs. disc-retained gastro-jejunal tubes in children

PURPOSE: Building on our previous work demonstrating that balloon-retained gastro-jejunostomy tubes (BGJ) avoid complications unique to disc-retained devices but require more frequent replacement, we evaluated caregiver experience and healthcare resource use to better inform tube selection in children. METHODS: Families whose children had experienced both Freka® percutaneous endoscopic gastro-jejunostomy (FPEGJ) and BGJ completed a paired questionnaire assessing nine experience domains (0-5 Likert-type scales) with free-text comments. Scores were compared using the Wilcoxon signed-rank test and comments underwent thematic analysis. A 24-month NHS resource-use model compared staged FPEGJ followed by planned BGJ conversion with primary laparoscopic BGJ insertion using 2026/27 NHS Payment Scheme tariffs. RESULTS: Twelve of thirteen eligible families responded(92.3%). Nine(75%) preferred BGJ and three had no preference. No questionnaire domain differed significantly, although BGJ showed trends towards greater comfort and easier daily care, while FPEGJ showed a trend towards less leakage. Families favoured BGJ because of its lower profile, avoidance of general anaesthesia (GA) for replacement and avoidance of buried bumper syndrome. Standard staged FPEGJ treatment cost £4,192 over 24 months compared with £6,024 for primary laparoscopic BGJ, saving £1,831(30.4%). Even with laparoscopic assistance, FPEGJ remained 22.1% less expensive. Routine BGJ exchanges were the principal cost driver. CONCLUSIONS: A staged FPEGJ-to-BGJ strategy appears to provide the best balance between caregiver experience and NHS resource use. However, disc-retained devices commit children to at least one future GA, the associated burden of which is not fully captured by cost analysis. BGJ with reliable 12-month durability may further reduce procedural burden and healthcare costs.