Immunosuppression after pediatric liver transplant: The parents' perspective
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Updated: Aug 10, 2025

Trans-vivo Delayed Type Hypersensitivity Assay for Antigen Specific Regulation
Published on: May 2, 2013
Irini Batsis1, John Bucuvalas1, Elizabeth Eisenberg2
1Department of Pediatrics, Icahn School of Medicine, Kravis Children's Hospital at Mount Sinai, New York, New York, USA.
Insights
Parents of children with liver transplants (LT) worry more about immunosuppression complications than rejection. Greater focus on managing these complications is needed for ideal long-term outcomes.
Area of Science:
- Pediatric Gastroenterology and Hepatology
- Transplant Immunology
- Patient-Reported Outcomes
Background:
- Achieving optimal outcomes after pediatric liver transplantation (LT) involves balancing immunosuppression to prevent graft injury while minimizing systemic complications.
- Understanding the parental perspective on this delicate balance is crucial for comprehensive care.
Purpose of the Study:
- To explore parental concerns and perspectives regarding immunosuppression management in children following liver transplantation.
- To identify key areas of uncertainty and concern for caregivers to improve patient care strategies.
Main Methods:
- An internet-based survey was administered to parents of children who had undergone liver transplantation.
- Data collected included demographics, time since transplant, and parental concerns regarding immunosuppression, rejection, and complications.
Main Results:
- Parents expressed greater concern about immunosuppression complications than transplant rejection, even among those on monotherapy.
- Caregivers reported higher certainty in their child's immunosuppression regimen preventing rejection compared to mitigating complications.
- Time since LT did not significantly correlate with the level of concern for rejection or complications.
Conclusions:
- Caregivers of pediatric liver transplant recipients exhibit heightened concern and uncertainty regarding immunosuppression complications versus rejection risk.
- Incorporating parental and patient perspectives into immunosuppression counseling is vital for achieving ideal long-term outcomes in pediatric liver transplantation.
Background:
For children with liver transplants (LT), achieving an "ideal outcome" is a balancing act: too little immunosuppression begets graft injury; too much begets systemic complications. We aimed to delineate the parental perspective on this tightrope.
Methods:
Parents of children with LT completed an internet-based survey about their child's immunosuppression.
Results:
Children of respondents (n = 82) were a median 4 years from primary LT (range 0-22); 73% were on immunosuppression monotherapy. Parents' top concerns were related to immunosuppression complications; 46% were more concerned about immunosuppression complications than rejection; only 17% were more concerned about rejection than immunosuppression complications. Among parents of children on immunosuppression monotherapy, 29% still worried more about immunosuppression complications than rejection, 48% expressed equal concern for both. Time since LT (0-4 vs. >4 years) was not associated with concern level for rejection or immunosuppression complications. Caregivers were significantly more certain that their child's immunosuppression regimen was correct to prevent rejection than to mitigate complications (p < .005).
Conclusion:
Caregivers of children with LTs reported higher levels of concern and uncertainty about immunosuppression complications than rejection risk. Understanding parent and patient perspectives on IS, and incorporating them into immunosuppression counseling and decision-making, is critical to achieving truly "ideal" long-term outcomes.
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