The findings, published in The Journal of Pediatrics, come from the first multisite prospective trial to evaluate real-time discrepancies in patient-reported outcomes for pediatric liver transplant recipients.
The study included 140 parent-child pairs across seven transplant centers in the United States and Canada—all members of the Starzl Network for Excellence in Pediatric Transplantation (SNEPT). Both parents and children completed the Pediatric Liver Transplant Quality of Life questionnaire, which measures how well a child is adjusting emotionally, socially, and physically after transplant. Researchers developed an innovative app that calculated parent-child response differences in real time and delivered the results to clinicians during routine visits.
They found that the greater the difference between how a parent and a child perceived the child’s quality of life, the lower the child’s actual quality of life—regardless of whether the parent viewed things more positively or more negatively than the child. In other words, the direction of the disagreement did not matter; the size of the gap itself was what proved meaningful. These differences were far stronger predictors of well-being than the child’s medical or liver health indicators. This marks a major shift from the long-standing focus on clinical metrics toward a more holistic, patient-centered approach.
“This study introduces a completely new way to understand patient-reported outcomes,” said Eyal Shemesh, MD, Chief of the Division of Behavioral and Developmental Health, Department of Pediatrics, Mount Sinai Kravis Children's Hospital, corresponding author of the paper, and co-Principal Investigator of the trial. “Historically, clinicians and researchers have asked, ‘Who is right—the parent or the child?’ Our work flips that question. What matters is how different their views are. Those discrepancies provide powerful insight into how the child is truly coping, and they offer clinicians a real-time opportunity to bridge perspectives and meaningfully improve a child’s well-being.”
By accessing the PeLTOL questionnaire through a mobile application for the first time, clinicians will be able to identify and discuss parent-child differences during a clinic visit, enabling more informed conversations, stronger alignment, and potentially improved emotional and psychological outcomes for children recovering from transplantation. The approach has broad implications beyond transplant medicine and may reshape how patient-reported outcomes are interpreted across pediatric chronic illnesses.
“This study demonstrates the possibility of creating electronic applications by asking patient and caregivers about their needs and applying the resulting technology to address those wishes and potentially improve outcomes via mobile technology in a network setting,” said George V. Mazariegos, MD, a senior author on the study and co-Principal Investigator. Dr. Mazariegos is also a Professor of Surgery at University of Pittsburgh Medical Center (UPMC) and UPMC Children's Hospital of Pittsburgh, and founder and chair of SNEPT.
The implications for families are equally significant. By highlighting where parents and children see things differently, the app can spark better communication, shared understanding, and more collaborative decision-making about treatment and daily care. Children may feel more heard and understood, while parents gain a clearer view of their child’s lived experience.
"The questionnaire used in this study puts a child’s lived experience at the center of our understanding of their post-transplant journey,” said Vicky Lee Ng, MD, co-author of this study, creator of PeLTOL, Professor of Pediatrics at the University of Toronto and Medical Director of Paediatric Liver Transplantation at The Hospital for Sick Children, Toronto, Canada. “This study demonstrates that caregiver-child discrepancies can illuminate gaps in understanding that help guide more attuned, responsive care.” Dr. Ng is also the President of the North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition.
“This is a powerful example of how digital tools can elevate patient and family-centered care,” said Dr. Claire Dunphy, PhD, Assistant Professor, Pediatrics (Behavioral Pediatrics), Icahn School of Medicine at Mount Sinai, and co-author on this paper. “By giving clinicians immediate insight into parent-child perspectives, we can improve communication, tailor support, and better understand how young patients are navigating life after a major medical procedure. These findings have the potential to improve quality of life for thousands of children and families.”
The app will now be deployed across centers in the SNEPT network to help institutions nationwide incorporate this new approach into routine care. Researchers note that this work may generally influence how pediatric quality-of-life assessments are scored and interpreted in the future.
Next steps include studying how clinicians can best address discrepancies once they are identified. While the team now knows how to measure and interpret these differences—and that they matter greatly—they aim to determine the most effective methods for using this information to enhance patient outcomes.
This study was funded in part by the Agency for Healthcare Research and Quality (AHRQ). DOI: https://doi.org/10.1016/j.jpeds.2025.114900
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