Objective: To assess the safety aspects of carers enteral feeding (EF) technique when home tube feeding (HETF) children with inherited metabolic disorders (IMD).
Methods: 40 patients (median age 5.1yrs: range 0.3-13.6yrs) with IMD requiring pump tube feeding were recruited. 12 had GSD; 11 organic acidaemias; 8 fatty acid oxidation disorders; 4 urea cycle disorders and 5 had other conditions. 50% were fed by gastrostomy and 50% nasogastric tube. A questionnaire and practical assessment of feeding process was completed with carers by a dietitian and nurse in the child’s home. Areas investigated included: carer hygiene; feed preparation; tube care; tube changing; use of feeding pumps and equipment; and storage of EF equipment.
Results: The main issues identified were poor hygiene practices (78% unclean work surfaces; 25% no hand washing); inaccurate ingredient measuring (40%); irregular checking of tube position (40%); inadequate tube flushing (50%); poor knowledge of how to clear tube blockages (80%); incorrect priming of pump sets (50%); incorrect position of child for night feeding (63%); untrained secondary carers (43%); and poor knowledge of pump alarms, battery life and charging time. Children commonly slept in parent’s room as a safety precaution (58%).
Conclusions: Long term follow up of children with IMD on HETF suggests that regular updates on knowledge and technique for carers may be necessary to reduce risk.