Matthew J Weiss1,2,3,4,5,6, Beatriz Domínguez-Gil7, Nick Lahaie6, Thomas A Nakagawa8,9, Angie Scales10, Laura Hornby6, Meagan Green6, Ben Gelbart11,12,13, Kay Hawkins10, Sonny Dhanani5,6,14,15, Anne I Dipchand16, Sam D Shemie6,17,18. 1. Division of Pediatric Intensive Care, Centre-Mère Enfant Soleil du CHU de Québec, Québec City, Québec, Canada. 2. Department of Pediatrics, Faculté de Médecine, Université Laval, Québec City, Québec, Canada. 3. Population Health and Optimal Health Practices Research Unit, CHU de Québec-Université Laval Research Center, Traumatology-Emergency-Critical Care Medicine, Université Laval, Québec City, Québec, Canada. 4. Deceased Donation, Transplant Québec, Montréal, Québec, Canada. 5. Canadian Donation and Transplant Research Program, Edmonton, Alberta, Canada. 6. Deceased Donation, Canadian Blood Services, Ottawa, Ontario, Canada. 7. Organización Nacional de Trasplantes, Madrid, Spain. 8. Department of Anesthesiology and Critical Care, Johns Hopkins University School of Medicine, Baltimore, Maryland. 9. Department of Medicine, Johns Hopkins All Children's Hospital, St. Petersburg, Florida. 10. National Health Service, Blood and Transplant, Bristol, UK. 11. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia. 12. Intensive Care Unit, Royal Children's Hospital, Melbourne, Victoria, Australia. 13. Murdoch Children's Research Institute, Melbourne, Victoria, Australia. 14. Division of Critical Care, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada. 15. Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada. 16. Department of Paediatrics, Labatt Family Heart Centre, University of Toronto, Toronto, Ontario, Canada. 17. Division of Critical Care, Montreal Children's Hospital, McGill University Health Centre and Research Institute, Montréal, Québec, Canada. 18. Department of Pediatrics, McGill University, Montréal, Québec, Canada.
Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. DISCUSSION: 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.
BACKGROUND: 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. METHODS: 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. RESULTS: 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. DISCUSSION: 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.