Wide Variation in Organization and Clinical Practice Between Pediatric Intestinal Failure Teams: a European survey
Esther Neelis1, Barbara de Koning1, Myriam van Winckel2, Merit Tabbers3, Susan Hill4, Jessie Hulst1.
1Pediatric Gastroenterology, Erasmus MC - Sophia Children's Hospital, Rotterdam, Netherlands; 2Pediatric Gastroenterology, Ghent University, Ghent, Belgium; 3Pediatric Gastroenterology, Academic Medical Center - Emma Children's Hospital, Amsterdam, Netherlands; 4Pediatric Gastroenterology, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom
Introduction: It is recommended to treat children with intestinal failure (IF) receiving home parenteral nutrition (HPN) in multidisciplinary teams. However, we hypothesize that the current care for children with IF is heterogeneous. The aim of this study was to assess the similarities and differences in organisation and clinical practice of pediatric IF teams across Europe.
Methods: We conducted an online survey between September-December 2016. Members of ESPGHAN – Network for IF and Transplantation in Europe, British Society of Paediatric Gastroenterology, Hepatology and Nutrition and members of ESPEN with special interest in pediatric nutrition were invited. Respondents were asked to forward the survey to other pediatric IF teams. The first part concerned general information about the team. Respondents who completed the first part were invited for the second part, concerning specific topics important in the care of children with IF.
Results: Seventy-three respondents completed the first part, representing 60 teams in 21 countries. The median number of children on HPN was 16 (range 1-125, most 1-5 y of age). The median number of team members were as follows: 2 pediatric gastroenterologists (min-max: 0-7), 2 pediatric surgeons (0-5), 1 dietician (0-4), 1 nurses/nurse practitioners (0-8), 1 pharmacist (0-3), 0 physical therapists (0-3), and 0 speech therapists (0-2). The second part of the survey was completed by 62/73 of the respondents (54/60 teams). The HPN was mostly customized by the pharmacy. Table 1 shows the use of catheter lock solutions, lipid emulsion , specific medication and monitoring of nutritional status. Bone densitometry was used yearly in 31% of the teams, while it was never used in 21%. In 47% of the teams, neuropsychological development was standardly assessed. A speech therapist was involved in the introduction of oral feeding in 72% of the teams.
Conclusion: Practices of pediatric IF teams vary widely across Europe. Topics with most variation were strategies for catheter care, medication and monitoring of bone health. Additionally, wide diversity exists between numbers of patients and composition of the IF team. This survey shows the need for evaluation of the existing guideline. Moreover, expert-based practical protocols are needed for optimizing care.
 Koletzko B. et al. 1. Guidelines on Paediatric Parenteral Nutrition of the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and the European Society for Clinical Nutrition and Metabolism (ESPEN), Supported by the European Society of Paediatric Research (ESPR). J Pediatr Gastroenterol Nutr. 2005 Nov;41 Suppl 2:S1-87.