Department of Paediatric Gastroenterology, Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands.
Department of Paediatric Gastroenterology, Ghent University, Ghent, Belgium.
Clin Nutr. 2018 Dec;37(6 Pt A):2271-2279. doi: 10.1016/j.clnu.2017.11.008. Epub 2017 Nov 22.
BACKGROUND & AIMS: We aimed to assess the current organisation and clinical practice of teams treating children with intestinal failure (IF) across Europe and compare the results with the current guideline.
A two-part online survey was sent to all the major European specialist IF services. The first part concerned general information about the team and patients monitored. The second part concerned important care topics such as vascular access and monitoring of complications. No patient identifiers were collected.
Seventy-three respondents completed the first part, representing 61 teams in 20 countries. The median number of children on parenteral nutrition (PN) at home per team was 15 (range 1-125). Teams consisted of the following members: paediatric gastroenterologist (present in 100% of the teams), dietitian (95%), specialist nurse (92%), paediatric surgeon (89%), pharmacist (82%), psychologist (66%), social worker (62%), speech therapist (48%), physiotherapist (38%), general paediatrician (33%). The second part was completed by 67/73 respondents (59/61 teams). Vascular access care was comparable with the guideline. Somatostatin analogues were prescribed by 14% of the IF teams and probiotics by 44% of the teams. Prophylactic anticoagulation was used by 46% of the teams. In 81% of the teams a multicomponent lipid emulsion containing fish oil was routinely used. Bone densitometry was regularly performed in 75% of teams, but never performed in 19%.
In conclusion, there is a wide diversity of composition of IF teams and their number of patients treated. Overall, there is good compliance to the current guideline. Clinical practice that varied most was the standard use of medication such as probiotics and somatostatin analogues, and standard monitoring of long-term complications. Experience regarding specific treatment options should be shared. Moreover, international agreement on standards of care with focus on implementation of the guideline is needed to optimise care and improve outcomes of children with IF.
本研究旨在评估欧洲治疗儿童肠衰竭（IF）的团队的组织和临床实践现状，并与当前指南进行比较。
我们向所有主要的欧洲 IF 专科服务机构发送了一份两部分的在线调查。第一部分涉及团队和监测患者的一般信息。第二部分涉及血管通路和并发症监测等重要护理主题。没有收集任何患者识别信息。
73 名受访者完成了第一部分调查，代表了来自 20 个国家的 61 个团队。每个团队在家进行肠外营养（PN）的儿童中位数为 15 名（范围 1-125 名）。团队成员包括：儿科胃肠病学家（100%的团队都有）、营养师（95%）、专科护士（92%）、儿科外科医生（89%）、药剂师（82%）、心理学家（66%）、社会工作者（62%）、言语治疗师（48%）、物理治疗师（38%）、普通儿科医生（33%）。第二部分由 73 名受访者中的 67 名（61 个团队中的 59 个）完成。血管通路护理与指南一致。14%的 IF 团队开具了生长抑素类似物，44%的团队开具了益生菌。46%的团队使用预防性抗凝治疗。81%的团队常规使用含有鱼油的多组份脂肪乳剂。75%的团队定期进行骨密度测定，但 19%的团队从不进行。
总之，IF 团队的组成和治疗的患者数量存在很大差异。总体而言，对当前指南的依从性较好。差异最大的临床实践是益生菌和生长抑素类似物等药物的标准使用，以及长期并发症的标准监测。应该分享特定治疗选择的经验。此外，需要就护理标准达成国际共识，并侧重于实施指南，以优化儿童 IF 的护理并改善其结局。
