Ophelia Aubert, Willemijn Irvine, Dalia Aminoff, Ivo de Blaauw, Salvatore Cascio, Célia Cretolle, Barbara Daniela Iacobelli, Martin Lacher, Konstantinos Mantzios, Paola Midrio, Marc Miserez, Sabine Sarnacki, Eberhard Schmiedeke, Cornelius Sloots, Pernilla Stenström, Nicole Schwarzer, Jan-Hendrik Gosemann
{"title":"ERN eUROGEN《肛门直肠畸形管理指南》,第四部分:医疗组织和医疗人员之间的沟通。","authors":"Ophelia Aubert, Willemijn Irvine, Dalia Aminoff, Ivo de Blaauw, Salvatore Cascio, Célia Cretolle, Barbara Daniela Iacobelli, Martin Lacher, Konstantinos Mantzios, Paola Midrio, Marc Miserez, Sabine Sarnacki, Eberhard Schmiedeke, Cornelius Sloots, Pernilla Stenström, Nicole Schwarzer, Jan-Hendrik Gosemann","doi":"10.1055/s-0044-1791248","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong> Being born with an anorectal malformation (ARM) can have profound and lifelong implications for patients and parents. Organization of care and communication between health care providers is an overlooked area of patient care. The European Reference Network eUROGEN for rare and complex urogenital conditions assembled a panel of experts to address these challenges and develop comprehensive guidelines for the management of ARM.</p><p><strong>Methods: </strong> The Dutch Quality Standard for ARM served as the basis for the development of guidelines. Literature was searched in Medline, Embase, and Cochrane. The ADAPTE method was utilized to incorporate the newest available evidence. A panel of 15 experts from seven European countries assessed currency, acceptability, and applicability of recommendations. Recommendations from the Dutch Quality Standard were adapted, adopted, or rejected and recommendations were formed considering all available evidence, expert consensus, and the European context.</p><p><strong>Results: </strong> Aspects pertaining to organization of care, patient/parent/health care provider communication, and referral and collaboration between providers caring for ARM patients were assessed. Two new studies were identified. In total, the panel adapted 12 recommendations, adopted 7, and developed 2 de novo. The overall level of newly found evidence was considered low and most recommendations were based on expert opinion.</p><p><strong>Conclusion: </strong> Collaborative care and organization of care are gaining importance in the field of ARM. This guideline gives practical guidance on how to achieve better communication and collaboration between all involved parties, applicable at the European level.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":""},"PeriodicalIF":1.5000,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication between Providers.\",\"authors\":\"Ophelia Aubert, Willemijn Irvine, Dalia Aminoff, Ivo de Blaauw, Salvatore Cascio, Célia Cretolle, Barbara Daniela Iacobelli, Martin Lacher, Konstantinos Mantzios, Paola Midrio, Marc Miserez, Sabine Sarnacki, Eberhard Schmiedeke, Cornelius Sloots, Pernilla Stenström, Nicole Schwarzer, Jan-Hendrik Gosemann\",\"doi\":\"10.1055/s-0044-1791248\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong> Being born with an anorectal malformation (ARM) can have profound and lifelong implications for patients and parents. Organization of care and communication between health care providers is an overlooked area of patient care. The European Reference Network eUROGEN for rare and complex urogenital conditions assembled a panel of experts to address these challenges and develop comprehensive guidelines for the management of ARM.</p><p><strong>Methods: </strong> The Dutch Quality Standard for ARM served as the basis for the development of guidelines. Literature was searched in Medline, Embase, and Cochrane. The ADAPTE method was utilized to incorporate the newest available evidence. A panel of 15 experts from seven European countries assessed currency, acceptability, and applicability of recommendations. Recommendations from the Dutch Quality Standard were adapted, adopted, or rejected and recommendations were formed considering all available evidence, expert consensus, and the European context.</p><p><strong>Results: </strong> Aspects pertaining to organization of care, patient/parent/health care provider communication, and referral and collaboration between providers caring for ARM patients were assessed. Two new studies were identified. In total, the panel adapted 12 recommendations, adopted 7, and developed 2 de novo. The overall level of newly found evidence was considered low and most recommendations were based on expert opinion.</p><p><strong>Conclusion: </strong> Collaborative care and organization of care are gaining importance in the field of ARM. This guideline gives practical guidance on how to achieve better communication and collaboration between all involved parties, applicable at the European level.</p>\",\"PeriodicalId\":56316,\"journal\":{\"name\":\"European Journal of Pediatric Surgery\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2024-10-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European Journal of Pediatric Surgery\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1055/s-0044-1791248\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Pediatric Surgery","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1055/s-0044-1791248","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PEDIATRICS","Score":null,"Total":0}
引用次数: 0
摘要
导言:先天性肛门直肠畸形(ARM)会给患者和家长带来深远和终生的影响。护理组织和医疗服务提供者之间的沟通是患者护理中一个被忽视的领域。欧洲罕见复杂泌尿生殖系统疾病参考网络 eUROGEN 组建了一个专家小组,以应对这些挑战并制定 ARM 管理的综合指南:方法:荷兰 ARM 质量标准是制定指南的基础。在 Medline、Embase 和 Cochrane 中进行了文献检索。采用 ADAPTE 方法纳入最新的可用证据。一个由来自七个欧洲国家的 15 位专家组成的小组对建议的时效性、可接受性和适用性进行了评估。对荷兰质量标准中的建议进行了调整、采纳或否决,并在考虑所有可用证据、专家共识和欧洲背景的基础上形成了建议:结果:评估了与护理组织、患者/家长/医疗服务提供者之间的沟通、转诊以及 ARM 患者护理服务提供者之间的合作有关的方面。确定了两项新的研究。专家组共调整了 12 项建议,采纳了 7 项建议,并重新制定了 2 项建议。新发现的证据总体水平较低,大多数建议都是基于专家意见:协作护理和护理组织在 ARM 领域越来越重要。本指南为如何实现所有相关方之间更好的沟通与合作提供了实用指导,适用于欧洲层面。
ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication between Providers.
Introduction: Being born with an anorectal malformation (ARM) can have profound and lifelong implications for patients and parents. Organization of care and communication between health care providers is an overlooked area of patient care. The European Reference Network eUROGEN for rare and complex urogenital conditions assembled a panel of experts to address these challenges and develop comprehensive guidelines for the management of ARM.
Methods: The Dutch Quality Standard for ARM served as the basis for the development of guidelines. Literature was searched in Medline, Embase, and Cochrane. The ADAPTE method was utilized to incorporate the newest available evidence. A panel of 15 experts from seven European countries assessed currency, acceptability, and applicability of recommendations. Recommendations from the Dutch Quality Standard were adapted, adopted, or rejected and recommendations were formed considering all available evidence, expert consensus, and the European context.
Results: Aspects pertaining to organization of care, patient/parent/health care provider communication, and referral and collaboration between providers caring for ARM patients were assessed. Two new studies were identified. In total, the panel adapted 12 recommendations, adopted 7, and developed 2 de novo. The overall level of newly found evidence was considered low and most recommendations were based on expert opinion.
Conclusion: Collaborative care and organization of care are gaining importance in the field of ARM. This guideline gives practical guidance on how to achieve better communication and collaboration between all involved parties, applicable at the European level.
期刊介绍:
This broad-based international journal updates you on vital developments in pediatric surgery through original articles, abstracts of the literature, and meeting announcements.
You will find state-of-the-art information on:
abdominal and thoracic surgery
neurosurgery
urology
gynecology
oncology
orthopaedics
traumatology
anesthesiology
child pathology
embryology
morphology
Written by surgeons, physicians, anesthesiologists, radiologists, and others involved in the surgical care of neonates, infants, and children, the EJPS is an indispensable resource for all specialists.