This study aimed at evaluating how transition of care is currently being organized in the European Reference Networks (ERNs) health care providers (HCPs) in pediatric areas and in the Anorectal Malformation Network (ARM-Net) Consortium hospitals. An online questionnaire was sent to a total of 80 surgeons, members of or affiliated members of three networks: ARM-Net Consortium, ERN eUROGEN, and ERN ERNICA. Complete information were obtained for 45 HCPs, most of which deal with transition and still see a few adult patients (ca. 10%). Gynecological, gastroenterological, urological, colorectal, and continence issues were the major problems described by adult patients to their physicians, and in line with these prevalent complaints, they are referred to the appropriate adult specialists. Forty percent of patients complain about sexual and fertility problems, but the percentage of andrologists and sexologists involved in the caring of adult patients with ARM/Hirschsprung's disease is low, just above 10.9%. Most hospitals deal with transition, but three basic criteria (i.e., presence of: [1] an official written transitional program, [2] a transitional coordinator, and [3] written information on transition to be handled to patients) are jointly met only by six HCPs. According to the responders, the most important issue requiring improvement is the lack of interest and of specific preparation by adult specialists. The overall results of this exploratory survey confirm the need for the development of comprehensive programs for transition in these rare and complex diseases, and identify the hospitals that, in collaboration with the networks, could share best practices in organizing structured transitional pathways and well follow-ups.

本研究旨在评估欧洲参考网络 (ERN) 医疗保健提供者 (HCP) 在儿科领域和肛肠畸形网络 (ARM-Net) 联盟医院中目前如何组织护理转型。向总共 80 名外科医生、三个网络的成员或附属成员发送了一份在线问卷：ARM-Net 联盟、ERN eUROGEN 和 ERN ERNICA。获得了 45 名 HCP 的完整信息，其中大部分涉及过渡期，并且仍然会诊少数成年患者（约 10%）。妇科、胃肠病、泌尿科、结直肠和失禁问题是成年患者向医生描述的主要问题，并且根据这些普遍的抱怨，他们被转介给适当的成年专家。40% 的患者抱怨性和生育问题，但参与 ARM/先天性巨结肠成年患者护理的男科医师和性科医师的比例很低，仅略高于 10.9%。大多数医院处理过渡，但三个基本标准（即存在：[1] 官方书面过渡计划，[2] 过渡协调员，以及 [3] 向患者处理过渡的书面信息）仅共同满足由六个 HCP。据响应者称，需要改进的最重要问题是成人专家缺乏兴趣和具体准备。这项探索性调查的总体结果证实需要制定针对这些罕见和复杂疾病的综合过渡计划，并确定医院，