Pediatric Transplantation. 2018;22:e13091. wileyonlinelibrary.com/journal/petr | 1 of 4 https://doi.org/10.1111/petr.13091 © 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd Accepted: 1 November 2017 DOI: 10.1111/petr.13091 COMMENTARY Consideration of children with intellectual disability as candidates for solid organ transplantation—A practice in evolution Aaron Wightman 1,2 | Douglas Diekema 1,2 | Aviva Goldberg 3 1 Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA 2 Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital, Seattle, WA, USA 3 Department of Pediatrics, University of Manitoba College of Medicine, Winnipeg, MB, Canada Correspondence Aaron Wightman, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA. Email: Aaron.wightman@seattlechildrens.org Abstract Children with intellectual disability were historically excluded from consideraon as recipients of solid organ transplants. In light of an evoluon in provider pracces, this commentary will define intellectual disability and review the relevant provider a- tudes and guidelines and known outcomes of solid organ transplant in this populaon. KEYWORDS allocation, children, graft survival, intellectual disability, literature review, pediatric, transplantation 1 | INTRODUCTION Children with ID were historically excluded from consideration for solid organ transplant, despite being considered acceptable organ donors. Terry Urquhart, a 17-year-old boy with Trisomy 21 and congenital lung disease, was rejected as a candidate for lung transplant in 1995, bring- ing the role of ID in transplant candidacy into the public sphere. The transplant selection committee of the University of Alberta initially re- jected Urquhart’s candidacy on the grounds that he did not meet the explicit criterion of “satisfactory intelligence,” but later changed the policy after public pressure. 1,2 Following the Urquhart case, we have witnessed an evolution in provider attitudes, national guidelines, and outcomes in the consideration of children with intellectual disabilities as transplant candidates. In this paper, we will focus on ID rather than physical disability. Few would suggest that a solid organ transplant was not in the best interest of a child with a profound physical disability but completely intact cognition, and it appears that concerns about intellect, rather than physical functioning, drive much of the policy and contro- versy, on this issue. 3-5 The American Association on Intellectual and Developmental Disabilities defines ID as a significant impairment in both (1) intellectual functioning and (2) adaptive behavior with onset prior to 18 years of age. 6 While tests for intellectual functioning and adaptive behavior have been developed, there is no consensus for testing for ID in children. Despite this, transplant providers report to regularly consider ID in considerations for transplant. 7 2 | PROVIDER ATTITUDES AND GUIDELINES In a 1991 survey of 411 pediatric and adult transplant centers, Levenson and Oberlisch found 94% of cardiac, 87% of liver, and 76% of kidney transplant centers considered an IQ of <50 as a relative or absolute contraindication for transplantation. 8 In 2000, Orr and col- leagues proposed a protocol that considered the presence of severe disability when determining whether or not to recommend cardiac retransplantation. 9 A 2006 survey found 85% of pediatric transplant centers considered neurodevelopmental status in evaluation, and 71% considered subnormal IQ a relative or absolute contraindication to transplant. 7 None of the centers had a formal mechanism to evaluate for ID; still some centers expressed that they would “prefer” or even “pressure” a family for living donor transplantation in these situations so that a child with neurodevelopmental disability would not “take” an organ from the deceased donor pool. 7 Perhaps most strikingly, 38% of Abbreviations: ID, intellectual disability; QoL, quality of life; SRTR, Scientific Registry of Transplant Recipients.