title: Monitoring of home safety issues in children on enteral feeds with inherited metabolic disorders.
abstract: 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.
authors.affiliation: Dietetic Department, Birmingham Children's Hospital, UK. evanss21@onetel.com
authors.forename: S
authors.initials: S
authors.lastname: Evans
authors.forename: F
authors.initials: F
authors.lastname: Shelton
authors.forename: C
authors.initials: C
authors.lastname: Holden
authors.forename: A
authors.initials: A
authors.lastname: Daly
authors.forename: V
authors.initials: V
authors.lastname: Hopkins
authors.forename: A
authors.initials: A
authors.lastname: MacDonald
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000193:education / Q000592:standards; D002648:Child; D002675:Child, Preschool; D004739:England; D004750:Enteral Nutrition / Q000295:instrumentation / Q000379:methods / Q000592:standards*; D004868:Equipment Failure; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services / Q000592:standards*; D006801:Humans; D006920:Hygiene / Q000592:standards; D007223:Infant; D008661:Metabolism, Inborn Errors / Q000628:therapy*; D011446:Prospective Studies; D012449:Safety; D012890:Sleep