Intestinal failure in children and young people with neurodisabling conditions

Wahid, Amar; Powell, Colin; Davies, I.G.; Evans, Jennifer; Jenkins, Huw

doi:10.1136/archdischild-2016-311387

Cited by 10 publications

(16 citation statements)

References 4 publications

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“…This practice survey also included children with other diagnoses. Within this category, most notably are children with neurodisabilities where dysmotility is well described ( 37,38 ) . The current guidelines from the European Society for Paediatric Gastroenterology, Hepatology and Nutrition on the nutritional management of children with neurodisabilities suggest trialling whey‐based feeds in children with symptoms of gastro‐oesophageal reflux ( 25 ) .…”

Section: Discussionmentioning

confidence: 99%

The use of extensively hydrolysed and amino acid feeds beyond cow’s milk allergy: a national survey

Smith

Sealy

Mancell

et al. 2020

J Human Nutrition Diet

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Background Extensively hydrolysed formulas (EHFs) and amino acid formulas (AAFs) with proven hypoallergenicity are used for children suffering from cow’s milk allergy, when breast milk is not available. However, these feeds are often used in other medical conditions where tolerance and absorption of whole protein is affected, frequently without assessment of efficacy. This practice survey assessed the use of these feeds in paediatric conditions other than cow’s milk allergy; aiming to describe the population, growth parameters and micronutrient status. Methods Four National Health Service tertiary paediatric centres participated in this practice survey. Inclusion: children between 0 and 18 years, consuming >25% of their estimated energy requirements of an EHF/AAF for any condition other than allergic disease. Anonymised data were collected: (i) descriptive information; (ii) indications; (iii) type and route of feeding; (iv) growth status and nutritional deficiencies; and (v) medication and vitamin and mineral supplementation. Results One hundred‐and‐ninety‐one children were included with a median age of 19 months (interquartile range 4–63]. Seventeen percent (33/191) were on AAFs and 83% (158/191) were on EHFs. The feeds were commonly used in cancer for 26% and in critical illness for 31%. The majority (73%) of children had enteral feeds via a nasogastric tube. Nutritional biomarkers were performed in 29% of children and 83% were on a vitamin or mineral supplement. Conclusions This practice survey found that EHFs and AAFs were used in a variety of medical conditions. Indications for feed choice varied, and evidence‐based research supporting the use was scarce. Awaiting further research, children on these types of feeds should have regular nutritional monitoring.

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Section: Discussionmentioning

confidence: 99%

The use of extensively hydrolysed and amino acid feeds beyond cow’s milk allergy: a national survey

Smith

Sealy

Mancell

et al. 2020

J Human Nutrition Diet

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“…Managing intestinal failure in this patient group may be challenging. Specifically, neurodisabled patients, whose survival is progressively increasing, may need long term PN to cope with intestinal motility disorders [ 22 ]. We are facing some uncertainty about the possibility of returning these patients back to enteral feeding and ethical issues arise on the activation of HPN in these life-limiting conditions.…”

Section: Discussionmentioning

confidence: 99%

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)

et al. 2018

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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.

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“…Gut and intestinal failure is increasingly being recognized in children with neurodisabling conditions ( 229 ). This is not surprising given the sizeable interface between the central and enteric nervous system.…”

Section: Gastrointestinal Dysfunctionmentioning

confidence: 99%

Multi-Organ Dysfunction in Cerebral Palsy

et al. 2021

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Cerebral Palsy (CP) describes a heterogenous group of non-progressive disorders of posture or movement, causing activity limitation, due to a lesion in the developing brain. CP is an umbrella term for a heterogenous condition and is, therefore, descriptive rather than a diagnosis. Each case requires detailed consideration of etiology. Our understanding of the underlying cause of CP has developed significantly, with areas such as inflammation, epigenetics and genetic susceptibility to subsequent insults providing new insights. Alongside this, there has been increasing recognition of the multi-organ dysfunction (MOD) associated with CP, in particular in children with higher levels of motor impairment. Therefore, CP should not be seen as an unchanging disorder caused by a solitary insult but rather, as a condition which evolves over time. Assessment of multi-organ function may help to prevent complications in later childhood or adulthood. It may also contribute to an improved understanding of the etiology and thus may have an implication in prevention, interventional methods and therapies. MOD in CP has not yet been quantified and a scoring system may prove useful in allowing advanced clinical planning and follow-up of children with CP. Additionally, several biomarkers hold promise in assisting with long-term monitoring. Clinicians should be aware of the multi-system complications that are associated with CP and which may present significant diagnostic challenges given that many children with CP communicate non-verbally. A step-wise, logical, multi-system approach is required to ensure that the best care is provided to these children. This review summarizes multi-organ dysfunction in children with CP whilst highlighting emerging research and gaps in our knowledge. We identify some potential organ-specific biomarkers which may prove useful in developing guidelines for follow-up and management of these children throughout their lifespan.

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Intestinal failure in children and young people with neurodisabling conditions

Cited by 10 publications

References 4 publications

The use of extensively hydrolysed and amino acid feeds beyond cow’s milk allergy: a national survey

The use of extensively hydrolysed and amino acid feeds beyond cow’s milk allergy: a national survey

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)

Multi-Organ Dysfunction in Cerebral Palsy

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