Vilanova-Sanchez Alejandra, Halleran Devin R, Reck-Burneo Carlos A, Gasior Alessandra C, Weaver Laura, Fisher Meghan, Wagner Andrea, Nash Onnalisa, Booth Kristina, Peters Kaleigh, Williams Charae, Brown Sarah Mayer, Lu Peter, Fuchs Molly, Diefenbach Karen, Leonard Jeffrey R, Hewitt Geri, McCracken Kate, Di Lorenzo Carlo, Wood Richard J, Levitt Marc A
Center for Colorectal and Pelvic Reconstruction, Nationwide Children's Hospital, Columbus, OH.
Center for Colorectal and Pelvic Reconstruction, Nationwide Children's Hospital, Columbus, OH.
J Pediatr Surg. 2019 Mar;54(3):479-485. doi: 10.1016/j.jpedsurg.2018.04.019. Epub 2018 Apr 19.
Patients with anorectal malformations (ARM), Hirschsprung disease (HD), and colonic motility disorders often require care from specialists across a variety of fields, including colorectal surgery, urology, gynecology, and GI motility. We sought to describe the process of creating a collaborative process for the care of these complex patients.
We developed a model of a devoted center for these conditions that includes physicians, psychologists, social workers, nurses, and advanced practice nurses. Our weekly planning strategy includes a meeting with representatives of all specialties to review all patients prior to evaluation in our multidisciplinary clinic, followed by combined exams under anesthesia or surgical intervention as needed.
There are 31 people working directly in the Center at present. From the Center's start in 2014 until 2017, 1258 patients were cared for from all 50 United States and 62 countries. 360 patients had an ARM (110 had a cloacal malformation, 11 had cloacal exstrophy), 223 presented with HD, 71 had a spinal malformation or injury causing neurogenic bowel, 321 had severe functional constipation or colonic dysmotility, and 162 had other diagnoses including familial polyposis, Crohn's disease, or ulcerative colitis. We have had 170 multidisciplinary meetings, 170 multispecialty outpatient, and 52 nurse practitioner clinics. In our bowel management program we have seen a total of 514 patients in 36 sessions.
This is the first report describing the design of a multidisciplinary team approach for patients with colorectal and complex pelvic malformations. We found that approaching these patients in a collaborative way allows for combined medical and surgical decisions with many providers simultaneously, facilitates therapy, and can potentially improve patient outcomes. We hope that this model will help establish new-devoted centers in other locations to encourage centralized care for these rare malformations.
IV.
患有肛门直肠畸形（ARM）、先天性巨结肠（HD）和结肠动力障碍的患者通常需要多个领域的专家提供护理，这些领域包括结直肠外科、泌尿外科、妇科和胃肠动力科。我们试图描述为这些复杂患者建立协作护理流程的过程。
我们为这些病症建立了一个专门的中心模式，其中包括医生、心理学家、社会工作者、护士和高级执业护士。我们的每周规划策略包括与所有专科的代表开会，在多学科诊所进行评估之前对所有患者进行复查，然后根据需要在麻醉下进行联合检查或手术干预。
目前有31人直接在该中心工作。从该中心2014年成立到2017年，来自美国所有50个州和62个国家的1258名患者得到了护理。360例患者患有ARM（110例为泄殖腔畸形，11例为泄殖腔外翻），223例表现为HD，71例有脊柱畸形或损伤导致神经源性肠病，321例有严重的功能性便秘或结肠动力障碍，162例有其他诊断，包括家族性息肉病、克罗恩病或溃疡性结肠炎。我们共召开了170次多学科会议、170次多专科门诊和52次执业护士诊所。在我们的肠道管理项目中，36次诊疗共接待了514名患者。
这是第一份描述针对结直肠和复杂盆腔畸形患者的多学科团队方法设计的报告。我们发现，以协作方式处理这些患者能够让众多医疗服务提供者同时做出联合医疗和手术决策，促进治疗，并有可能改善患者的治疗效果。我们希望这个模式将有助于在其他地方建立新的专门中心，以鼓励对这些罕见畸形进行集中护理。
IV级
