Weiss Matthew J, Domínguez-Gil Beatriz, Lahaie Nick, Nakagawa Thomas A, Scales Angie, Hornby Laura, Green Meagan, Gelbart Ben, Hawkins Kay, Dhanani Sonny, Dipchand Anne I, Shemie Sam D
Division of Pediatric Intensive Care, Centre-Mère Enfant Soleil du CHU de Québec, Québec City, Québec, Canada.
Department of Pediatrics, Faculté de Médecine, Université Laval, Québec City, Québec, Canada.
Pediatr Transplant. 2019 May;23(3):e13345. doi: 10.1111/petr.13345. Epub 2019 Feb 5.
There are no currently agreed upon international standards for reporting of pediatric deceased organ donation activity. This leads to difficulty in comparisons between jurisdictions for both researchers and policy stakeholders. The goal of this project was to develop and test a standardized registry for pediatric deceased donation activity.
Four countries (Canada, Spain, USA, and the UK) with geographical and practice diversity were approached to participate. Iterative exchanges were used to create data fields and definitions that were acceptable to all participants. Data from 2011 to 2015 (inclusive) were requested from national health databases and analyzed on a secure, web-based survey platform.
Data were obtained from three of the four countries (Canada unable to provide). Total pediatric donation rates were stable over the 5-year period, but with variation between countries. pDCD rates were the most variable, representing 32.2% of total pediatric donation in the UK, 14.4% in the United States, and 2.6% in Spain during the studied period. Most organs from pediatric donors were allocated to adult recipients, though the rates of allocation of pediatric kidneys to pediatric recipients ranged from 7% in the United States to 40% in Spain.
In this limited cohort of three countries, we demonstrated substantial variation in pediatric donation rates and practice. These data highlight opportunities for practice improvement such as the development of rigorous clinical practice guidelines. Future development of this registry will seek to engage more countries, and address barriers that prevented full participation of approached jurisdictions.
目前尚无公认的关于小儿器官捐献活动报告的国际标准。这给研究人员和政策利益相关者在不同司法管辖区之间进行比较带来了困难。本项目的目标是开发并测试一个小儿死亡捐献活动的标准化登记系统。
邀请了四个在地理和实践方面具有多样性的国家（加拿大、西班牙、美国和英国）参与。通过反复交流来创建所有参与者都能接受的数据字段和定义。从国家卫生数据库中获取了2011年至2015年（含）的数据，并在一个安全的基于网络的调查平台上进行分析。
从四个国家中的三个国家获取了数据（加拿大无法提供）。在这5年期间，小儿总捐献率保持稳定，但各国之间存在差异。在研究期间，推定死亡后捐献（pDCD）率变化最大，在英国占小儿总捐献的32.2%，在美国占14.4%，在西班牙占2.6%。尽管小儿肾脏分配给小儿受者的比例在美国为7%，在西班牙为40%，但大多数小儿供体的器官被分配给了成人受者。
在这三个国家组成的有限队列中，我们证明了小儿捐献率和实践存在很大差异。这些数据凸显了实践改进的机会，例如制定严格的临床实践指南。该登记系统未来的发展将寻求让更多国家参与，并解决阻碍所邀请司法管辖区充分参与的障碍。
