Non-interventional, retrospective data of long-term home parenteral nutrition in patients with benign diseases: analysis a nurse register (SERECARE)

Abstract Objectives Evaluation of safety and efficacy of Home Parenteral Nutrition (HPN) service in patients with benign Chronic Intestinal Failure (CIF). Methods A ten-year retrospective, non-interventional, multicentre study conducted in adult and paediatric patients with CIF who received an HPN service, by analysing data prospectively collected in a dedicated register by HPN nurses. Results From January 2002 to December 2011 a total of 794 patients (49.7% male, median age 1 year for children and 57 years for adults) were included in the analysis. Over the 10-y period, 723 Central Venous Catheter (CVC) complications occurred, of which 394 were infectious (54.5%), 297 mechanical (41.1%), and 32 (3.3%) were defined as CVC-related thrombosis. The complication rate was higher in children (1.11/patient) versus adults (0.70/patient). During the observation period, the rates of both infectious and mechanical complications showed a global declining trend and approximately three-fourths of patients had neither infectious nor mechanical CVC-complications. HPN efficacy was evaluated in 301 patients with a minimum follow-up of 36 months. Body Mass Index (BMI) and Karnofsky score showed that the median growth significantly increased (p Conclusions The use of a structured register has proved to be a key strategy to monitor the outcomes of long-term treatment, improving time efficiency and preventing potential malpractice. This is largest survey ever documented; the results were consistent despite the heterogeneity of the centres, because of duly applied standard rules and protocols.