BACKGROUND: Many children with rare chronic disorders require home enteral tube feeds (HETF) consisting of multiple modular ingredients. Feeds are often complex and the risk of errors during their preparation is high. The consequences of over- or under-concentration can be critical. The aim of the present prospective observation study was to assess the accuracy, skills and technique of caregivers when preparing and administering HETF. METHODS: Fifty-two HETF patients (median age 7.5 years, range 0.7-18.0 years) with inherited metabolic disorders (IMD) requiring special feeds were recruited. Using observation and a structured questionnaire, a practical assessment of feed preparation and storage by the main caregiver was undertaken by an independent dietitian and nurse in the child's home, including hygiene practices, accuracy of measuring recipe ingredients, and storage of both ingredients and prepared feeds. RESULTS: The majority (85%; n = 44) of feeds were based on >1 ingredient (median 3; range 1-6). Almost half (48%; n = 25) of caregivers measured feed ingredients inaccurately. Of the 31% (n = 16) using scoops, 31% used incorrect measuring spoons and 25% did not level scoops appropriately. Some 45% (n = 20/44) of carers measured liquid ingredients inaccurately. Hygiene practices during feed preparation were poor, including a lack of hand washing (31%: n = 16) and incorrect storage procedures for unused feed ingredients (56%; n = 29). CONCLUSIONS: Practices in the preparation of modular HETF for children with IMD were not ideal. A combination of inaccuracy, poor hygiene, inappropriate storage, and long feed hanging times increases both metabolic and microbial risk. Better education, regular monitoring and the development of ready-to-use or preweighed ingredients would be beneficial.
BACKGROUND: Many children with rare chronic disorders require home enteral tube feeds (HETF) consisting of multiple modular ingredients. Feeds are often complex and the risk of errors during their preparation is high. The consequences of over- or under-concentration can be critical. The aim of the present prospective observation study was to assess the accuracy, skills and technique of caregivers when preparing and administering HETF. METHODS: Fifty-two HETF patients (median age 7.5 years, range 0.7-18.0 years) with inherited metabolic disorders (IMD) requiring special feeds were recruited. Using observation and a structured questionnaire, a practical assessment of feed preparation and storage by the main caregiver was undertaken by an independent dietitian and nurse in the child's home, including hygiene practices, accuracy of measuring recipe ingredients, and storage of both ingredients and prepared feeds. RESULTS: The majority (85%; n = 44) of feeds were based on >1 ingredient (median 3; range 1-6). Almost half (48%; n = 25) of caregivers measured feed ingredients inaccurately. Of the 31% (n = 16) using scoops, 31% used incorrect measuring spoons and 25% did not level scoops appropriately. Some 45% (n = 20/44) of carers measured liquid ingredients inaccurately. Hygiene practices during feed preparation were poor, including a lack of hand washing (31%: n = 16) and incorrect storage procedures for unused feed ingredients (56%; n = 29). CONCLUSIONS: Practices in the preparation of modular HETF for children with IMD were not ideal. A combination of inaccuracy, poor hygiene, inappropriate storage, and long feed hanging times increases both metabolic and microbial risk. Better education, regular monitoring and the development of ready-to-use or preweighed ingredients would be beneficial.
Authors: Matthias R Baumgartner; Friederike Hörster; Carlo Dionisi-Vici; Goknur Haliloglu; Daniela Karall; Kimberly A Chapman; Martina Huemer; Michel Hochuli; Murielle Assoun; Diana Ballhausen; Alberto Burlina; Brian Fowler; Sarah C Grünert; Stephanie Grünewald; Tomas Honzik; Begoña Merinero; Celia Pérez-Cerdá; Sabine Scholl-Bürgi; Flemming Skovby; Frits Wijburg; Anita MacDonald; Diego Martinelli; Jörn Oliver Sass; Vassili Valayannopoulos; Anupam Chakrapani Journal: Orphanet J Rare Dis Date: 2014-09-02 Impact factor: 4.123