Pediatr Transplantation 2014: 18: 714–719

© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd

Pediatric Transplantation DOI: 10.1111/petr.12339

Prevalence and outcomes of renal transplantation in children with intellectual disability Wightman A, Young B, Bradford M, Dick A, Healey P, McDonald R, Smith J. (2014) Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatr Transplant, 18: 714–719. DOI: 10.1111/petr.12339.

Aaron Wightman1, Bessie Young2, Miranda Bradford3, Andre Dick4, Patrick Healey4, Ruth McDonald5 and Jodi Smith5 1

Abstract: To describe the prevalence and outcomes of renal transplantation in children with ID we performed a retrospective cohort analysis of all children receiving a first kidney-alone transplant in the UNOS dataset from 2008 to 2011. Recipients with definite, probable, and without ID were compared using chi-square tests. Kaplan–Meier curves were constructed for patient and graft survival. Cox proportional hazard models were used to estimate the association between ID and graft failure and patient survival. Over the study period, 332 children with definite (117) or probable (215) ID underwent first renal transplant, accounting for 16% of all first pediatric renal transplants (n = 2076). Children with definite ID were not significantly different from children without ID with respect to sex, ethnicity, or prevalence of acute rejection. ID was associated with increased likelihood of deceased donor source. ID was not significantly associated with decreased graft or patient survival. In this first largescale study, up to 16% of first pediatric renal transplants were performed in children with ID. Short-term graft and patient survival after transplant were equivalent between children with and without ID. Further research is needed to examine long-term outcomes of transplant in this population.

Division of Nephrology, Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA, 2Division of Nephrology, Department of Medicine,VA Puget Sound Healthcare System, Kidney Research Institute, University of Washington School of Medicine, Seattle, WA, USA, 3Center for Clinical and Translational Research, Seattle Children’s Research Institute, Seattle, WA, USA, 4Department of Surgery, University of Washington School of Medicine, Seattle, WA, USA, 5Division of Nephrology, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA Key words: renal transplant – intellectual disability – ethics – nephrology – outcomes Aaron Wightman, MD, MA, Division of Nephrology, Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Mail Code 4108, 600 Highland Ave, Madison, WI 53792-4108, USA Tel.: +1 608 263 9439 Fax: +1 608 265 3397 E-mail: [email protected] Accepted for publication 17 July 2014

Renal transplantation in children with ID is a contentious issue (1). Historically, children were denied access to transplantation due to intellectual disabilities (2). Reasons for exclusion included belief of reduced life expectancy, lack of cognitive ability to understand transplantation and comply with the required post-transplant therapy, and a lack of improvement in quality of life. A 1993 survey of 411 transplant centers

Abbreviations: APA, American Psychological Association; DQ, developmental quotient; ESKD, end-stage kidney disease; FSGS, focal segmental glomerulosclerosis; GED, general education development; GN, glomerulonephritis; ID, intellectual disability; IQ, intellectual quotient; PRA/ CPRA, panel reactive antibody/calculated panel reactive antibody; UNOS, United Network for Organ Sharing.

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found that 54% of renal transplant centers considered IQ

Prevalence and outcomes of renal transplantation in children with intellectual disability.

To describe the prevalence and outcomes of renal transplantation in children with ID we performed a retrospective cohort analysis of all children rece...
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