Prevalence and outcomes of heart transplantation in children with intellectual disability
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Updated: Mar 12, 2026

Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Aaron Wightman1, Heather L Bartlett2, Qianqian Zhao3
1Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.
Insights
Pediatric heart transplantation outcomes for children with intellectual disability are comparable to those without. This study found similar short-term graft survival and acute rejection rates in heart transplant recipients with intellectual disability.
Area of Science:
- Pediatric Cardiology
- Transplantation Medicine
- Developmental Pediatrics
Background:
- Heart transplantation in children with intellectual disability is a debated topic.
- Understanding outcomes is crucial for clinical decision-making.
Purpose of the Study:
- To determine the prevalence and outcomes of heart transplantation in pediatric recipients with intellectual disability.
- To compare short-term outcomes between children with and without intellectual disability.
Main Methods:
- Retrospective cohort analysis of the UNOS STAR database (2008-2013).
- Comparison of pediatric heart transplant recipients with and without intellectual disability.
- Statistical analysis including chi-square tests, Kaplan-Meier curves, and Cox proportional hazard models.
Main Results:
- 107 children (8.9%) with intellectual disability underwent heart transplantation.
- No significant difference in acute rejection rates in the first year post-transplant.
- Comparable graft survival rates between groups within the first 4 years.
- Improved functional status in both groups, though lower in those with intellectual disability.
Conclusions:
- Children with intellectual disability represent a notable percentage of pediatric heart transplant recipients.
- Short-term outcomes, including graft survival and rejection, are comparable between pediatric heart transplant recipients with and without intellectual disability.
Abstract:
Heart transplantation in children with intellectual disability is a controversial issue. We sought to describe the prevalence and outcomes of heart transplantation in children with intellectual disability and hypothesized that recipients with intellectual disability have comparable short-term outcomes compared to recipients without intellectual disability. We performed a retrospective cohort analysis of children receiving a first heart-alone transplant in the UNOS STAR database from 2008 to 2013. Recipients with intellectual disability were compared to those without 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 intellectual disability and graft failure and patient survival. Over the study period, 107 children with intellectual disability underwent initial heart transplantation, accounting for 8.9% of first pediatric heart transplants (total=1204). There was no difference in the incidence of acute rejection between groups in the first year after transplant. Mean functional status scores at follow-up improved in both groups after transplantation, but tended to be lower among children with intellectual disability than children without. Log-rank tests did not suggest significant differences in graft survival between those with and without intellectual disability during the first 4 years following transplantation. Children with intellectual disability constitute a significant portion of total heart transplants with short-term outcomes comparable to children without intellectual disability.
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