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

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

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.

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.

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.