The continued rise of paediatric home parenteral nutrition use: Implications for service and the improvement of longitudinal data collection

SummaryBackground & aimsRobust data from the United Kingdom (UK) regarding the current epidemiology of patients with types II and III intestinal failure (IF; ≥28 day parenteral nutrition; home parenteral nutrition) are limited. We aimed to analyse trends in type II and III IF in children in the UK using historical and novel data.MethodsA point survey of the 32 nutrition support teams that register patients with the British Intestinal Failure Survey was carried out in November 2012. Basic demographics for patients on home parenteral nutrition and receiving parenteral nutrition for ≥28 days were collected. Data were anonymised, collated by the registry coordinator and compared to previous surveys by the British Paediatric Surveillance Unit in 1993 and data from 2010.ResultsAll 32 participating centres responded giving complete UK ascertainment. There were 195 type III patients, representing a four-fold increase since 1993. The proportion of patients with short bowel syndrome had almost doubled from 1993 (27% vs. 50% p = 0.001). The ratio of type II to type III IF patients varied considerably between centres.ConclusionThese data suggest that type III IF point prevalence has risen in the short term, coincident with individual centres' reporting improved survival in IF. Refinement in the methodology for prospective data collection is needed to gather more accurate incidence, period prevalence and outcome data for UK type II and type III IF.