Home enteral tube feeding in children with inherited metabolic disorders: a review of long-term carer knowledge and technique.

Background: Home enteral tube feeding (HETF) is commonly used in children with inherited metabolic disorders (IMD). It is unclear how caregiver knowledge and their safety in using tube feeding techniques changes over time.

Methods: Caregivers of children with IMD on HETF from one UK IMD centre had annual interviews over 3 years using a structured questionnaire and observation to assess HETF knowledge and safety techniques.

Results: Thirty-two caregivers of IMD children (median age 5.3 years; range 0.3-13.6 years) were studied. Seventy-eight percent (n = 25) of subjects had been on HETF for >5 years. Over 3 years, many caregivers' HETF techniques deteriorated: accurate feed ingredient measurement decreased from 36% to 11%; correct flushing of tubes decreased from 56% to 44%; checking tube position as recommended decreased from 72% to 56%; and correct hand washing decreased from 38% to 25%. Despite improvements, knowledge of some aspects remained poorly understood: dangers of incorrect tube placement increased from 41% to 56%; correct position for night feeding increased from 38% to 56%; and feed ingredient storage decreased from 87% to 38%.

Conclusions: The HETF techniques of caregivers of children with IMD declined over time. Caregivers need to understand that HETF, particularly in IMD, is a serious procedure associated with life-threatening risks. Poor HETF practices may cause feed contamination, incorrect feed concentration, feed intolerance, aspiration, peritonitis and even metabolic decompensation. HETF skills should be reassessed annually, with compulsory retraining if basic 'core' HETF competencies are not demonstrated.