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Home enteral tube feeding in patients with inherited metabolic disorders: safety issues

S Evans1, A MacDonald, A Daly

  • 1Dietetic Department, Birmingham Children's Hospital, Birmingham, UK. evanss21@onetel.com

Journal of Human Nutrition and Dietetics : the Official Journal of the British Dietetic Association
|September 12, 2007
PubMed

Insights

Home enteral tube feeding (HETF) for children with inherited metabolic disorders (IMD) presents significant safety risks, including equipment failure and carer disturbance. Addressing these issues is crucial to prevent serious health complications in these vulnerable children.

Area of Science:

  • Pediatric Gastroenterology
  • Metabolic Disorders
  • Home Healthcare

Background:

  • Children with inherited metabolic disorders (IMD) often require long-term home overnight enteral tube feeding.
  • These children are at risk of hypoglycemia and metabolic decompensation.
  • Safety issues associated with home enteral tube feeding (HETF) in IMD patients have not been thoroughly evaluated.

Purpose of the Study:

  • To identify common safety concerns for children with IMD receiving HETF.
  • To assess the pressures experienced by carers managing HETF for IMD patients.

Main Methods:

  • A study involved 34 children (median age 4.1 years) with IMD on continuous overnight tube feeds.
  • Carers were interviewed using a questionnaire to gather data on.
  • Data collected included family involvement, training, child safety, equipment reliability, and carer disturbance.

Main Results:

  • 100% of carers reported sleep disturbance.
  • Common issues included tube entanglement (71%), untrained secondary carers (71%), and faulty pumps (50%).
  • Other problems were tube blockages (45%), equipment failure (32%), and child tampering (29%).

Conclusions:

  • Significant safety risks exist for children with IMD on HETF, potentially causing metabolic decompensation and hospitalization.
  • Urgent attention is needed for the safety of feeding equipment.
  • Improved training for extended family members and practical support for carers are essential.
Abstract

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