Ophelia Aubert, Willemijn F E Irvine, Dalia Aminoff, Ivo de Blaauw, Salvatore Cascio, Célia Cretolle, Barbara Daniela Iacobelli, Martin Lacher, Konstantinos Mantzios, Marc Miserez, Sabine Sarnacki, Eberhard Schmiedeke, Nicole Schwarzer, Cornelius Sloots, Pernilla Stenström, Paola Midrio, Jan-Hendrik Gosemann
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The European Reference Network for rare and complex urogenital conditions (eUROGEN) 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 foundation for the development of guidelines applicable on a European level. 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 7 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 the current evidence and/or expert consensus.</p><p><strong>Results: </strong> Lifelong follow-up, integration, and transition of care were assessed. A total of eight new studies were identified. The panel adapted 18 recommendations, adopted 6, and developed 6 de novo. Overall, the level of evidence was considered low.</p><p><strong>Conclusion: </strong> Successful lifelong follow-up and transition of care require a dedicated team of pediatric and adult specialist and an individually tailored patient-centered approach. 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引用次数: 0
摘要
导言:肛门直肠畸形(ARM)是肛门直肠部位复杂的先天性畸形,有时还会影响泌尿生殖系统。虽然在新生儿期通常可以通过手术成功矫正,但许多患儿长期会出现功能问题。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,并制定全面的 ARM 管理指南:方法:荷兰 ARM 质量标准是制定适用于欧洲的指南的基础。在 Medline、Embase 和 Cochrane 中进行了文献检索。利用 ADAPTE 方法纳入了最新的可用证据。一个由来自 7 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,并根据现有证据和/或专家共识形成了建议:结果:对终生随访、整合和护理过渡进行了评估。共确定了 8 项新研究。专家小组调整了 18 项建议,采纳了 6 项建议,并重新制定了 6 项建议。总体而言,证据水平较低:成功的终身随访和护理过渡需要一个由儿科和成人专科医生组成的专业团队,以及以患者为中心的个性化定制方法。本指南总结了有关 ARM 患者随访的现有最佳证据,并为制定结构化过渡计划提供了指导。
ERN eUROGEN Guidelines on the Management of Anorectal Malformations Part III: Lifelong Follow-up and Transition of Care.
Introduction: Anorectal malformations (ARMs) are complex congenital anomalies of the anorectal region, oftentimes also affecting the genitourinary system. Although successful surgical correction can often be achieved in the neonatal period, many children will experience functional problems in the long term. The European Reference Network for rare and complex urogenital conditions (eUROGEN) 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 foundation for the development of guidelines applicable on a European level. 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 7 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 the current evidence and/or expert consensus.
Results: Lifelong follow-up, integration, and transition of care were assessed. A total of eight new studies were identified. The panel adapted 18 recommendations, adopted 6, and developed 6 de novo. Overall, the level of evidence was considered low.
Conclusion: Successful lifelong follow-up and transition of care require a dedicated team of pediatric and adult specialist and an individually tailored patient-centered approach. This guideline summarizes the best available evidence on follow-up of ARM patients and provides guidance for the development of structured transition programs.
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.