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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Home enteral tube feeding (HETF) is common in children with inherited metabolic disorders (IMD). HETF is crucial to (1) deliver substrate and prevent metabolic instability in conditions such as glycogen storage disease (GSD) and long chain fatty acid oxidation disorders; (2) deliver high carbohydrate emergency feeds during illness, thereby minimising protein or fat catabolism and ultimately metabolic encephalopathy; and (3) minimise production of toxic metabolites in organic acidemias.
Careful management of enteral feeding (EF) is vital. Fatalities have been reported in GSD with overnight tube feeding,1 2 and in our own centre, life-threatening incidents associated with EF have occurred. Human error and faulty equipment were responsible. Serious incidents include the following: in children with GSD, two parents forgetting to turn on EF pumps leading to severe hypoglycaemia; a feeding pump delivering overnight feed at a slower rate, resulting in hypoglycaemic coma; and several incidents of feed leaking from disconnected tubes at night in young children with GSD and long chain fatty acid oxidation disorders.
What is already known on this topic
▶. For some children with inherited metabolic disorders (IMD), home enteral tube feeding (HETF) is crucial to prevent metabolic instability and potentially metabolic decompensation and encephalopathy.
▶. Fatalities and life-threatening incidents have been reported with overnight tube feeding in IMD, some due to human error, others to faulty equipment.
▶. There are many practical issues associated with home enteral feeding (EF) that may affect patient safety including: accidental or intentional tube dislodgement, pump inaccuracy, frequent blockages of tubes, and night-time carer sleep disturbance.
What this study adds
▶. The first published systematic observation of carer EF technique in the home setting.
▶. There are several significant safety issues associated with HETF in IMD including: poor hygiene; inaccurate ingredient measuring; irregular checking of tube position; incorrect position for night feeding; untrained secondary carers; and poor knowledge of pump alarms, battery life, and charging time.
▶. Carers of children with IMD on HETF would benefit from regular updates on knowledge and techniques of HETF.
Ensuring maintenance of carer knowledge and skills in administering HETF is essential. No published studies have systematically observed carer HETF technique. It is often assumed that patients and their families are knowledgeable and proficient in administering EF if they have been trained to a high standard in a hospital environment. Two studies specifically examining practical issues associated with HETF in our own centre indicated that there are many practical difficulties,3 4 and some may affect patient safety. Problems included accidental or intentional tube dislodgement, pump inaccuracy, and frequent tube blockages.
The aim of this prospective observation study was to conduct a detailed review of EF practices of carers of patients on long term HETF with IMD in order to identify practical issues potentially affecting patient safety.
All patients with IMD (n=41) on HETF feeds from one UK IMD centre, were invited to participate. Forty children were recruited (20 males; median age, 5.1 years (range, 0.3–13.6 years)); one family declined because of family circumstances. Inclusion criteria included (1) aged 0–18 years; (2) IMD diagnosis; (3) requiring HETF; and (4) feeding pump required for feed delivery (table 1).
Two families had two children with the same disorder on HETF. In 33% (n=13) only the mother prepared and administered EF; in 15% (n=6) the mother was the sole carer.
Following written carer consent, a research dietician and nurse visited each family at home and observed EF technique and feed preparation. They also assisted carers to complete an open-ended and multiple choice questionnaire. Carers were observed (1) checking tube position using pH paper; (2) preparing EF including hygiene practices, feed storage, use of feed recipes, and accuracy of measuring ingredients; (3) loading the feed and tubing onto the EF pump and drip stand or carry pack; and (4) demonstrating pump operation, including setting the rate and dose, clearance of previous settings, information retrieval about feed volume, and alarm knowledge. An interpreter was used when necessary (n=9).
The questionnaire and observation checklist was developed based on training criteria for initial hospital discharge on HETF. Questionnaire feedback was provided from nutritional care nurses, dieticians and carers. Each observation took 2 h to complete.
Ethical approval was obtained from the Ethics Committee of South Birmingham Health Authority and informed consent from carers and assent from children if capable.
Fifty-five per cent (n=22) of carers said they had 5 or more days of training before hospital discharge, 18% (n=7) had 1–4 days, and 28% (n=11) had less than 6 h.
Seventy-five per cent (n=30) of carers reported that they had received a written EF information pack from the hospital on initial discharge, but only 35% (n=14) had used it at home, most stating that they felt confident on discharge. Of the 68% (n=27) of homes where at least two people prepared and administered feeds, 43% (n=25/58) of the secondary carers were not trained by a health professional. This included some fathers (n=4), grandparents (n=10), aunts (n=11), uncles (n=1), and even siblings <16 years of age (n=2).
Hygiene and feed preparation
During feed preparation observation, one quarter (25%, n=10) of carers failed to wash their hands. Only 38% (n=15) washed their hands using the correct Ayliffe technique5 taught during initial training. Those who had been trained in the last 12 months were more likely to have washed their hands correctly and cleaned surfaces and equipment before preparation (table 2). Despite recommending that gloves be worn during EF preparation and set-up, only 13% (n=5) did so regularly.
The majority (93%, n=37) of feeds were based on >1 powder and/or liquid ingredient (median, 3; range 1–6) including water. Thirteen per cent (n=5) of carers used tap water rather than cool, boiled water in feeds, although these children were >3 years of age.
All carers knew how to correctly store feed ingredients before opening, but 13% (n=5) were unaware how to correctly store partly used powder or liquid ingredients. This included refrigerated feeds being used in excess of 24 h post preparation and opened powders being kept for >1 month. All carers were able to list at least three ways bacteria could contaminate feeds in preparation.
Thirty-five per cent (n=14) of patients had been admitted to hospital for diarrhoea, vomiting or chest infections (that may or may not have been attributable to HETF) (median, 2 admissions; range, 1–10) in the year preceding the observation. However there was no significant correlation between admissions and level of hygiene observed at home (Fisher exact test).
Most carers (95%, n=35) could recall all feed ingredients and quantities. Only 22% (n=8) referred to a written recipe for feed preparation; 16% (n=6) said they had no written feed recipe; and 62% had memorised it. Forty per cent (n=16) of carers measured feed ingredients inaccurately. Forty-five per cent (n=18) used scoops to measure out feed ingredients, but half of these (23%, n=9) did not ‘level off’ the scoop appropriately or even used the wrong scoop. When scales were used for ingredients, 35% (n=7/20) used inaccurate scales (>±5%), some by as much as 10%.
Changing feeding tube and checking tube position
Of the 20 children with nasogastric EF, 35% (n=7) of carers were unaware how to test that the tube had remained in position (by checking a mark on the tube prior to feeding). Seventy per cent (n=28) of carers knew when the tube position should be checked (when first put down, before feeding, before giving medications, after a coughing fit or vomiting, or if the length of visible tube has changed), but only 60% (n=24) tested at all of these times; 20% (n=8) of carers never checked the tube position (all gastrostomy fed).
Ten per cent (n=4) of carers were still using litmus paper rather than universal pH paper to check tube position, and 43% (n=17) were unaware of the correct pH range for safe feeding. Fifty-three per cent (n=21) of carers were unsure of available options if they were unable to aspirate fluid from the stomach to check tube position (lie child on left side; syringe 5–10 ml of air down the tube; give child a drink of water orally; remove and re-pass tube). However, all carers correctly stated that they would not feed the child if the tube position was in doubt. Of those with a nasogastric tube, one quarter (25%, n=5) did not know what signs they would see in the child if the tube was in the bronchial tubes.
Almost a third of children had their tube changed more frequently than recommended, mainly due to the child pulling, vomiting, or coughing the tube out (table 3).
While 75% (n=15) of nasogastric carers could demonstrate and describe how to measure and insert the tube, only 20% (n=4) were technically correct. Only 15% (n=3) of gastrostomy carers correctly knew the rare but potential dangers of the tube being in the wrong place during feeding (in the abdominal cavity rather than the stomach).
Tube flushing and tube blockage
Only half the carers were aware that the tube should be flushed before and after any feed or medication is given or at least three times a day if on continuous feeds (table 4).
Only 20% (n=8) could correctly state how to clear a blocked tube. One quarter (n=10) stated that they had or would use Coca Cola, but were unaware this could damage the tubing.
EF pump set-up and operation
Incorrect loading of pump sets and use of inappropriate drip stands can cause frequent alarming of pumps. Only 10% (n=4) of carers could correctly identify the meaning of all pump alarms, and 55% (n=22) could identify less than four of seven possible alarm displays. Only 38% (n=15) of carers knew the correct position of the child for overnight tube feeding (head of bed elevated) (table 5).
Sixty-five per cent (n=26) of carers reported that storage space in the home for feed and equipment was problematic and often inappropriate. Most feed and equipment was stored in the kitchen (60%, n=24) but also in bedrooms, garages, hall cupboards, the loft or cellar, lounge room, or under furniture (tables, sofas, beds). In a few cases it was stored in the bathroom, or in one case, outside covered with plastic sheeting.
Fifty-eight per cent (n=23) of children slept in their parents' room, and 18% (n=7) slept in the parents' bed because of safety concerns about issues such as tube entanglement or accidental disconnection.
In this observational study, it is clear there are several safety issues for patients with IMD on HETF, and carer knowledge and technique deteriorate with time. HETF safety aspects are a largely neglected area, and it is often unclear which health professionals are ultimately accountable for EF following hospital discharge.
Current national recommendations for HETF are sparse. In 1994, the British Association for Parenteral and Enteral Nutrition produced a document focusing on enteral nutrition in the community6 that states that 24 h before discharge the client and/or carer will have the knowledge, skills, and social support necessary to receive safe, effective enteral nutrition. It also states that monitoring will be performed by a designated health professional. However, these guidelines are broad as they cater for all ages (adults and children) and all disease conditions, and no one health professional is given the responsibility for monitoring and follow-up. Ultimately, it is up to individual treatment centres to develop protocols and procedures for HETF. Training is usually performed by ward nursing staff, some of whom may discharge patients on HETF infrequently. There is a real need for more specific national standards for HETF including specific guidelines for children and for high-risk patients such as those with IMD. The emphasis of training needs to reflect the risks associated with HETF. So for children with IMD, proficient use of pumps and accurate preparation of feeds are the priority. This necessitates more specific training, ideally by staff trained in IMD.
It is difficult to assess home feeding technique in a hospital environment, and while community nurses may visit patients in HETF, in many cases, lack of resources dictate that they be reactive rather than proactive, responding to problems as they occur. Following initial discharge from hospital, some carers are left to administer EF with little health professional support, and it is assumed they are doing this task appropriately unless carers seek help. Because of the complexity and increased risks associated with HETF in children with IMD, they require more specialised training initially, followed by regular monitoring and training updates — for example, 6 monthly reviews of feed preparation and administration technique. As a consequence, community nurses involved with these patients would benefit from a detailed training programme in IMD.
It was particularly concerning that untrained carers (including two siblings <16 years of age) were administering EF at home. Although most primary carers had received comprehensive hospital training, feeding technique had often deteriorated and knowledge was inadequate, yet many still trained family members and others to give EF. It is essential all extended carers involved in EF are trained by an appropriate health professional. All personnel involved in HETF should be issued with a safety certificate perhaps involving both a written and practical exam, which should be reviewed periodically by a health professional specialised in HETF.
Simple hygiene practices such as handwashing are lacking in many homes, and this deteriorates with length of time on HETF. Several studies have demonstrated that bacterial contamination associated with preparation of enteral feeds is more common in the home.7 8 This is particularly associated with the use of feeds prepared from multiple feed ingredients.7 In addition, it has been shown that improving hygiene techniques can greatly reduce microbial contamination of feeds including the use of alcohol-treated preparation equipment, wearing nonsterile disposable gloves, and minimising contact with the feeding system.9,–,11 These practices help to minimise the risk of gastrointestinal infections, which may lead to hospitalisation. Regular health professional spot checks and simple visual aids of correct hygiene techniques may improve practices.
There are few ready-to-use feeds suitable for patients with IMD, so accurate measurement of modular feed ingredients is essential and relies on the appropriate use and accuracy of digital scales or measuring scoops. Unfortunately, scales are rarely checked following issue, and carers commonly lose measuring scoops replacing them with alternative scoops or measuring devices. The development of more ready-to-feed products for patients with IMD would help to alleviate these problems.
Any training update programme should include knowledge of pump function including; alarms, battery life, charging time, and correct placement of tubing to prevent unnecessary alarming. It was concerning that knowledge of pump alarms was poor. Annual checks should be conducted to ensure that all equipment is functioning and appropriate. Written pump information should be available as a reference. In addition, patients with IMD should have a second backup pump that is kept on charge. Pumps should be rotated to ensure that there are always two pumps in working order in case of mains failure. Home delivery companies need to be vigilant with servicing and replacement of faulty pumps.
While it is difficult to determine how many illnesses are caused by errors in enteral feed preparation and administration in the home, the risks are high. The additional support suggested as a consequence of this study can be justified by the reduction in risk of metabolic decompensation and mortality. Even if we could prevent one death or permanent disability, it would justify the additional training and extra home visits suggested, not to mention the cost savings in terms of potential reductions in hospital admissions.
In conclusion, children with IMD on HETF are vulnerable and require regular and comprehensive follow-up in the community. Long-term monitoring of the adequacy of carer training is currently poor. Interventions such as regular updates of carer knowledge and appropriate training and review for any additional carers involved in EF would be beneficial. Ideally, all of this should be done by health professionals who specialise in HETF, and key health workers should take overall responsibility for HETF in the community. This should improve safety, and hopefully, minimise morbidity and even mortality associated with HETF in children with IMD.
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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