Abstract
Many children with inherited metabolic disorders (IMD), at risk of hypoglycaemia and metabolic decompensation, are dependent on long-term home overnight enteral tube feeding but its safety issues have not been evaluated. To identify common safety issues and carer pressures for patients with IMD on home enteral tube feeds (HETF). Thirty-four patients (53% male; median age 4.1, range: 1.2-15.8 years), with IMD on home continuous overnight tube feeds were recruited. They were all following specialized feeding regimens. A questionnaire, administered by face-to-face interview with carers identified family members involved in feeding, training they received; child safety issues; equipment reliability and carer night time disturbance. The principal problems were: carer sleep disturbance (100%); tube entanglement (71%); untrained secondary carers (71%); faulty pumps (50%); tube blockages (45%); faulty equipment (32%); and child tampering with pumps and feeding equipment (29%). Significant risks for children on HETF with IMD were identified, potentially leading to metabolic decompensation and hospitalization. The safety of feeding equipment, lack of training of extended family members and practical support for carers requires urgent attention.
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