I’m thrilled to sit down with Dr. Ivan Kairatov, a renowned expert in pediatric medicine with a focus on liver transplantation and patient-reported outcomes. With years of experience in research and innovation, Dr. Kairatov has been at the forefront of shifting how we understand children’s well-being after major medical procedures like liver transplants. Today, we’ll dive into his groundbreaking work on the differences between parent and child perspectives on quality of life, the development of cutting-edge tools to support patient care, and what this means for families and clinicians moving forward.
Can you tell us what sparked your interest in researching how children fare after liver transplantation, particularly focusing on their personal experiences rather than just medical data?
I’m glad to share that. My interest really started from seeing a gap in how we measure success after pediatric liver transplants. For so long, we’ve relied on lab results and clinical markers, but those don’t always tell the full story of how a child is coping day-to-day. I wanted to explore the human side of recovery—how these kids feel emotionally and socially. Focusing on personal experiences, especially through the lens of both the child and their parent, felt like a natural next step to truly understand their journey and improve outcomes in a more meaningful way.
What led you to specifically examine the differences in how parents and children perceive the child’s well-being?
That’s a great question. I noticed early on that there’s often a disconnect between how a child describes their own life after a transplant and how their parent sees it. This isn’t about who’s right or wrong, but rather about what that difference tells us. I became curious about whether those gaps could reveal something deeper about the child’s struggles or needs that medical tests might miss. It’s a perspective that hadn’t been widely explored before, and I felt it could open up new ways to support these families.
Can you walk us through how you designed and conducted this study involving so many parent-child pairs across multiple centers?
Absolutely. We worked with 140 parent-child pairs across seven transplant centers in the US and Canada, all part of a collaborative network focused on pediatric transplantation. We carefully selected participants to represent a diverse range of experiences and backgrounds, ensuring the findings would be broadly applicable. Coordinating across multiple locations was challenging but rewarding—it allowed us to gather a rich dataset. We used a standardized approach to collect responses during routine clinic visits, which helped us capture real-time insights into their lives post-transplant.
Tell us about the Pediatric Liver Transplant Quality of Life questionnaire. What does it measure, and how does it help in understanding a child’s recovery?
The questionnaire, often called PeLTOL, is a tool we designed to assess how a child is adjusting after a transplant across several key areas: emotional well-being, social interactions, and physical health. It includes questions about things like how often a child feels sad or anxious, how they’re getting along with friends, and whether they’re struggling with pain or fatigue. By having both the child and parent answer these questions separately, we get a fuller picture of the child’s recovery, highlighting areas where they might need more support that aren’t always obvious in a clinical exam.
Your findings showed that a bigger gap between parent and child perceptions of quality of life often means lower well-being for the child. Why do you think this discrepancy is so significant?
That’s one of the most striking parts of our research. The size of the gap matters because it often points to a lack of shared understanding or communication about the child’s true state. When a parent and child see things very differently, it can signal that the child’s struggles—whether emotional or physical—aren’t being fully recognized or addressed. This mismatch can hinder recovery, as it might mean the child isn’t getting the right kind of help or encouragement they need at home or from their care team.
This study marks a shift toward a more patient-centered approach in pediatric transplantation. How do you see this changing the way clinicians support children and their families?
It’s a big shift, and I think it’s incredibly promising. By focusing on patient-reported outcomes, clinicians can move beyond just treating the body and start addressing the whole person. This means having more open conversations with families about how the child feels, not just how their liver is functioning. It encourages doctors to dig deeper into emotional or social challenges and tailor support plans accordingly. For families, it’s about feeling heard and working together with the medical team to ensure the child thrives in every aspect of life.
Let’s talk about the mobile app you developed for this study. How does it help clinicians address parent-child differences in real time during clinic visits?
The app is a game-changer. It allows us to input responses from the PeLTOL questionnaire right during a clinic visit and instantly calculate the differences between a parent’s and child’s views on quality of life. This real-time feedback means clinicians can bring up those discrepancies in the moment, sparking meaningful discussions with the family. It helps bridge gaps in understanding right away, whether it’s clarifying how the child feels or reassuring a parent about what’s normal during recovery. It’s a practical tool that makes patient-centered care more actionable.
What do you think the broader implications of this research are for other areas of pediatric medicine beyond transplantation?
I believe this approach has huge potential across all kinds of pediatric chronic conditions, like diabetes or heart disease. Anywhere you have long-term care, you’re likely to see differences in how kids and parents perceive the situation. Understanding and addressing those differences can improve communication, mental health, and overall outcomes, no matter the illness. It’s about putting the child’s lived experience at the center of care, which is a principle that can—and should—apply everywhere in medicine.
Looking ahead, what is your forecast for the future of patient-reported outcomes in pediatric care?
I’m really optimistic. I think we’re just at the beginning of seeing how powerful patient-reported outcomes can be. With advances in technology, like mobile apps and digital tools, we’ll be able to integrate these insights into everyday care more seamlessly. My hope is that in the next decade, it becomes standard practice to consider a child’s and family’s perspective as equally important as clinical data. This could transform how we define success in pediatric medicine, focusing not just on survival, but on helping kids live full, happy lives after treatment.
