Non-interventional, 5-year retrospective data of home parenteral nutrition in patients with benign chronic intestinal failure: Analysis of an Italian nurse registry (SERECARE II)

• Published in: Nutrition (Burbank, Los Angeles County, Calif.) Los Angeles County, Calif.), 2024-04, Vol.120, p.112257-112257, Article 112257
• Main Authors: Guglielmi, Francesco William, Diamanti, Antonella, Gandullia, Paolo, Aimasso, Umberto, Arrigo, Serena, Capriati, Teresa, Elia, Domenica, Guidetti, Mariacristina, Lezo, Antonella, Madeo, Annalisa, Mazzuoli, Silvia, Merlo, Fabio Dario, Regano, Nunzia, Sasdelli, Anna Simona, Pironi, Loris, De Francesco, Antonella
• Format: Article
• Language: English
• Subjects: Adults; Body mass index; Caregivers; Catheters; Chronic intestinal failure; Confidentiality; Data collection; Effectiveness; Efficacy; Home parenteral nutrition; Intestine; Italy; Males; Median (statistics); Medical instruments; Medical personnel; Missing data; Nurses; Nutrition; Parenteral nutrition; Patients; Pediatrics; Quality of life; Safety; SERECARE registry
• ISSN: 0899-9007; 1873-1244
• DOI: 10.1016/j.nut.2023.112257

•Appropriate management of long-term home parenteral nutrition is crucial to improve service performance and safety and efficacy outcomes.•Data were collected and recorded by a team of trained nurses to continuously improve safety procedures.•In the period 2013 to 2018, further reductions in infectious and mechanical complications and in rates of hospitalization were seen compared with the previous study period (2002–2011).•Observed trends were similar for all patients, regardless of age group. This study is an assessment of home parenteral nutrition service performance and safety and efficacy outcomes in patients with benign chronic intestinal failure. This is a retrospective, non-interventional, and multicenter study. Data were collected by trained nurses and recorded in a dedicated registry (SERECARE). From January 1, 2013 to June 30, 2018, data from a total of 683 patients with benign chronic intestinal failure were entered in the registry. Patients included 208 pediatric (53.8% male; median age = 4.0 y) and 475 adult (47.6% male; median age = 59.0 y) participants. On average, patients were visited 5.4 ± 4.5 times and received 1.4 ± 0.8 training sessions. Retraining was not common and mostly due to change of therapy or change of caregiver. Of 939 complications, 40.9% were related to the central venous catheter and were mostly infectious (n = 182) and mechanical (n = 187). The rate of infectious and mechanical complications per 1000 catheter days decreased over 5 y (0.30–0.15 and 0.33 –0.19, respectively). The rate of complications per 1000 catheter days and the mean complications per patient were higher in pediatric than in adult patients. The hospitalization rate was 1.01 per patient throughout the study period. These data were similar to those registered in a previous study period (2002–2011) (n = 1.53 per patient). Changes over time in the efficacy variables were mostly small and non-significant. This study confirms the importance of setting up and maintaining structured registries to monitor and improve home parenteral nutrition care. Safety outcomes have improved over the years, most likely due to the underlying efficient nursing service.