Objective To assess the safety aspects of carers' enteral feeding technique when home enteral tube feeding children with inherited metabolic disorders (IMD).
Methods 40 patients (median age, 5.1 years; range, 0.3–13.6 years) with IMD requiring pump tube feeding were recruited. 12 patients had glycogen storage disease, 11 organic acidemias, 8 fatty acid oxidation disorders, 4 urea cycle disorders, and 5 had other conditions. 50% of the patients were fed by gastrostomy and 50% nasogastric tube. A questionnaire and practical assessment of feeding process was completed with carers by a dietician 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 enteral feeding 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 home enteral tube feeding suggests that regular updates on knowledge and technique for carers may be necessary to reduce risk.
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Funding The paediatric enteral feeding nurse involved in the study was employed by Nutricia Clinical Care to provide home training and practical assistance for patients on the Homeward delivery service in the local area. The principal investigator's position is funded by Nutricia Clinical Care, Whitehorse Business Park, Trowbridge, Wiltshire BA14 0XQ, UK.
Competing interests None.
Ethics approval This study was conducted with the approval of the Ethics Committee of South Birmingham Health Authority, Birmingham, UK.
Provenance and peer review Not commissioned; externally peer reviewed.
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