Despite surgical advances for complex congenital colorectal conditions, such as anorectal malformation (ARM) and Hirschsprung disease (HD), many adolescents require transfer from specialist pediatric to adult providers for ongoing care. A systematic review of PubMed, MEDLINE and Embase was conducted to identify what is known about the transitional care of patients with ARM and HD (PROSPERO # CRD42022281558). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) framework guided our reporting of studies that focused on the transition care of 10–30-year-olds with ARM and HD. Eight studies were identified that included patient and parent (n = 188), and/or clinician perspectives (n = 334). Patients and clinicians agreed that transitional care should commence early in adolescence to support transfer to adult care when a suitable level of maturation is reached. There was little evidence from patients that transfer happened in a timely or coordinated manner. Patients felt that clinicians did not always understand the significance of transfer to adult services. No models of transition care were identified. Surgeons ranked ARM and HD as the most common conditions to experience delayed transfer to adult care. Beyond pediatric surgeons, patients also highlighted the importance of general practitioners, transitional care coordinators and peer support groups for successful transition. There is little research focused on transitional care for patients with ARM and HD. Given evidence of delayed transfer and poor experiences, the development of models of transitional care appears essential.

中文翻译：

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结直肠疾病从儿科医疗保健向成人医疗保健的转变：系统评价

尽管复杂的先天性结直肠疾病（例如肛门直肠畸形（ARM）和先天性巨结肠症（HD））的外科手术取得了进展，但许多青少年需要从儿科专科转到成人提供者的持续护理。对 PubMed、MEDLINE 和 Embase 进行了系统回顾，以确定有关 ARM 和 HD 患者过渡护理的已知信息 (PROSPERO # CRD42022281558)。系统评价和荟萃分析的首选报告项目 (PRISMA) 框架指导我们的研究报告，重点关注 10-30 岁 ARM 和 HD 患者的过渡护理。确定了八项研究，其中包括患者和家长 (n = 188) 和/或临床医生的观点 (n = 334)。患者和临床医生一致认为，过渡护理应在青春期早期开始，以支持在达到适当的成熟水平时转向成人护理。几乎没有来自患者的证据表明转移是及时或协调进行的。患者认为临床医生并不总是理解转移到成人服务的重要性。没有确定过渡护理模式。外科医生将 ARM 和 HD 列为延迟转移至成人护理的最常见病症。除了小儿外科医生之外，患者还强调了全科医生、过渡护理协调员和同伴支持小组对于成功过渡的重要性。很少有研究关注 ARM 和 HD 患者的过渡护理。鉴于转移延迟和不良体验的证据，过渡性护理模式的发展显得至关重要。