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Prevalence and Long-Term Outcomes of Solid Organ Transplant in Children with Intellectual Disability

      Objectives

      To describe the prevalence and long-term outcomes of kidney, liver, and heart transplant for children with an intellectual disability.

      Study design

      We performed a retrospective cohort analysis of children receiving a first kidney, liver, or heart-alone transplant in the United Network for Organ Sharing dataset from 2008 to 2017. Recipients with definite intellectual disability were compared with those possible/no intellectual disability. Kaplan-Meier survival estimates were calculated for graft and patient survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft and patient survival.

      Results

      Over the study period, children with definite intellectual disability accounted for 594 of 6747 (9%) first pediatric kidney-alone, 318 of 4566 (7%) first pediatric liver-alone, and 324 of 3722 (9%) first pediatric heart-alone transplant recipients. Intellectual disability was not significantly associated with patient or graft survival among liver and heart transplant recipients. Among kidney transplant recipients, definite intellectual disability was significantly associated with higher graft survival and lower patient survival, but the absolute differences were small.

      Conclusions

      Children with intellectual disability account for 7%-9% of pediatric transplant recipients with comparable long-term outcomes to other pediatric recipients. These findings provide important empirical support for policies that include children with intellectual disability as transplant candidates.

      Abbreviation:

      ADA (Americans with Disabilities Act)
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      Linked Article

      • Ethics of Organ Transplantation in Persons with Intellectual Disability
        The Journal of PediatricsVol. 235
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          Historically, individuals with intellectual disability and end-stage organ disease were discriminated against by transplant professionals and often excluded from transplantation waitlists. Despite antidiscrimination legislation, some transplant programs continue to include intellectual disability as a relative, if not an absolute, contraindication to listing for an organ; this is true for both pediatric and adult individuals in end-stage organ disease. This commentary opposes the absolute exclusion of patients with intellectual disability and end-stage organ disease from transplantation waitlists provided that the candidates are expected to gain a predefined minimum benefit threshold of life-years and quality-adjusted-life years.
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