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Up to 85% of children with severe neurodisability have eating problems, many requiring tube feeding.1 2 Rarely, due to severe gastrointestinal dysmotility and feed intolerance, the enteral route is no longer an option and parenteral nutrition (PN) may need to be considered,3 raising extremely difficult ethical considerations in terms of inflicting harm while achieving minimal or no benefit, burdening individuals beyond their capabilities and ethical concerns of distributive justice.4 5
The aim of the study was to identify which intestinal failure (IF) centres in England offer home PN (HPN) for this group, how frequently this occurs and how decisions are made.
Short questionnaire was sent to the IF centres in England identified via the eBANS HPN registry after approval from the eBANS committee. Questions included: the number of patients currently …
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Collaborators Akshay Batra; Jutta Köeglmeier; Nkem Onyeador; Arun Urs; Sarang Tamhne; Jeng Cheng; Emma Jones; Anthony Wiskin; Camilla Salvestrini; Jonathan Hind; Sian Kirkham; Astor Rodrigues; Chris Smith; Ahmed Kadir; Jane Clayton; Andrew Fagbemi.
Contributors Idea for the study: JWP and EC. Literature search: EC. Who wrote the article: EC. Review of the article: JWP. Submitted the article: EC. Guarantor: EC.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
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