2017 - CIRTA


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9- Intestinal Failure

48.9 - Epidemiology of intestinal failure in children in the UK, and the evolution of Paed eBANS national digital registry

Presenter: Jonathan, Hind, London, United Kingdom
Authors: Jonathan Hind, Paul Henderson, Anthony Wiskin, Akshay Batra, Andrew Barclay

Epidemiology of intestinal failure in children in the UK, and the evolution of Paed eBANS national digital registry

Jonathan Hind1, Paul Henderson2, Anthony Wiskin3, Akshay Batra4, Andrew Barclay5.

1Paediatric Liver, GI and Nutrition Centre, King's College Hospital, London, United Kingdom; 2Paediatric Gastroenterology, Royal Hospital for Sick Children, Edinburgh, United Kingdom; 3Gastroenterology and Nutrition, Southampton Children's Hospital, Southampton, United Kingdom; 4Paediatric Gastroenterology, University Hospitals Bristol, Bristol, United Kingdom; 5Paediatric Gastroenterology, Royal Hospital for Children, Glasgow, United Kingdom

BSPGHAN NIFWG. Paed eBANS reporting centres.

Background: Accurate epidemiology of infants and children receiving parenteral nutrition (PN) for ≥28days (Type II intestinal failure (IF)) and long-term (type III IF) at home (HPN) is essential given the resource intensity and morbidity in this group. Until 2011, longitudinal registration of Type II and Type III IF in children in the UK was carried out by the British Intestinal Failure Survey. Full case ascertainment was hampered by paper-based reporting and the requirement of informed consent for registration. Since 2011, UK intestinal rehabilitation centres have collaborated nationally on development of a digital IF registry (Paed eBANS) to improve reporting and further explore epidemiology.

Aim: To describe the development of the Paed eBANS registry from 2011 and report epidemiological findings from this project.

Methods: An IF registry working group (WG) within the British Society of Paediatric Gastroenterology, Hepatology and Nutrition was formed in 2011 to:

1) perform IF point prevalence surveys

2) develop a new digital longitudinal registry allowing point of care entry without the requirement of consent for patient registration.

The WG agreed that a paediatric arm to the existing adult eBANS registry (www.e-bans.com) was the best option; primary (concise) and secondary (detailed) data sets were agreed. Ethical extension for Paed eBANS was approved by the Health Research Authority (England and Wales) in 2013. The primary dataset was developed and tested over 2013-2014.

Results: Point prevalence surveys were performed in 2012 and 2015.

Paed eBANS was live from January 2015. 4 early adopting centres increased to 10 regular reporting centres by 2016. These centres represent 70% of the type III IF population in the 2012 fully ascertained point prevalence survey [1]. 127 and 157 new episodes were recorded to the longitudinal registry in 2015 and 2016 respectively. Short bowel syndrome remains the largest single diagnostic category (39%).

The 2015 point prevalence data (70% ascertainment) suggest that full ascertainment would show an increase in HPN patients to 312, a rise of 64% from 2012 [Fig 1].

Conclusion: The Paed eBANS project has demonstrated the ability to obtain complete point prevalence data on type II and type III IF. A digital longitudinal registry with the ability to collect ongoing anonymised data at point of care now exists.

The marked increase in point prevalence of HPN by 2015 suggests that ongoing accurate IF epidemiology remains a preeminent concern.

[1] Barclay et al. The continued rise of paediatric home parenteral nutrition use: Implications for service and the improvement of longitudinal data collection. Clin Nutr. 2015; Dec 34(6):1128-32


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