Paediatric Home Artificial Nutrition in Italy: Report from 2016 Survey on Behalf of Artificial Nutrition Network of Italian Society for Gastroenterology, Hepatology and Nutrition (SIGENP)

Abstract

Home Artificial Nutrition (HAN) is a safe and efficacious technique that insures children’s reintegration into the family, society and school. Epidemiological data on paediatric HAN in Italy are not available. Aim: to detect the prevalence and incidence of Home Parenteral Nutrition (HPN) and Home Enteral Nutrition (HEN), either via tube or mouth, in Italy in 2016. Materials and methods: a specific form was sent to all registered SIGENP members and investigators of local HAN centres, inviting them to provide the requested centre’s data and demographics, underlying diseases and HAN characteristics of the patients. Results: we recorded 3403 Italian patients on HAN aged 0 to 19 years from 22 centres: 2277 HEN, 950 Oral Nutritional Supplements (ONS) and 179 HPN programs. The prevalence of HEN (205 pts/million inhabitants) and HPN (16 pts/million inhabitants) has dramatically increased in Italy in the last 9 years. Neurodisabling conditions were the first indication for HEN by tube or mouth while HPN is mainly requested in digestive disorders. Conclusions: HAN is a widespread and rapidly growing treatment in Italy, as well as in other European countries. Awareness of its extent and characteristics helps improving HAN service and patients’ quality of life.

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey

“…The median duration was 8.1 months, and the longest programs (between 25 months and 175 months) were those supporting NI children. More recently, a median HEN duration of 6 years has been reported [13]. Although the use of HEN has progressively increased in many countries [11,12,14,15], data on the impact of HEN on the QoL of NI children and their caregivers are scarce.…”

Paediatric intestinal failure and transplantation

“…1,2 Advances in neonatal critical care and the surgical management of children with complex conditions have been associated with a significant increase in children with IF requiring home PN. [3][4][5] In the UK, the rate of home PN in children has increased from 1.54 per million children in 2000 to 21.5 per million children in 2016. 5 Although the number of patients is relatively small, IF places a significant burden on affected children, their family and the health-care system.…”

“…5 Although the number of patients is relatively small, IF places a significant burden on affected children, their family and the health-care system. 1,3,5,6 Advances in intestinal rehabilitation and improvements in PN formulations and methods of safe administration mean many children who commenced PN in infancy now survive to adulthood. 1,7,8 The aim of this review is to highlight key recent advances in the care of children with IF.…”

“…11 Congenital conditions requiring massive surgical resection with the development of SBS include intestinal atresia (duodenal, jejunal, ileal or multiple intestinal atresias), abdominal wall defects (gastroschisis, omphalocoele) and intestinal malrotation with volvulus. 2,3,8 Approximately, 20% of IF due to SBS occurs outside the neonatal period, predominantly secondary to volvulus or trauma. 10 Functional neuromuscular gut disorders, including chronic intestinal pseudo-obstruction, Hirschsprung disease, hollow visceral myopathy and megacystis microcolon intestinal peristalsis syndrome comprised 43% of home PN patients in a recent UK series.…”

“…10 Functional neuromuscular gut disorders, including chronic intestinal pseudo-obstruction, Hirschsprung disease, hollow visceral myopathy and megacystis microcolon intestinal peristalsis syndrome comprised 43% of home PN patients in a recent UK series. 3,5,8 With improved survival, children with cancer and severe immunological conditions associated with extensive gastrointestinal mucosal inflammation are a growing cohort of home PN patients. 3,5 Another emerging group is children with neuro-disability associated with gastrointestinal dysmotility that interferes with enteral feeding, raising ethical concerns.…”