Dr. David Zorko: Ensuring Children Are Surviving and Thriving

(Access show transcript) Dr. David Zorko from McMaster Children’s Hospital is committed to researching the critical interventions and practices to best help children not only survive critical illness but thrive afterward.

Summary

For critically ill children, survival is just the beginning of their story and post-PICU (Pediatric Intensive Care Unit) care is the cornerstone of ensuring children thrive afterwards. Dr. David Zorko’s research places a magnifying glass on post-PICU care, aiming to better understand this type of care, identify the types of children who are at higher risk, and generate evidence-based practices to better support children and their families. 

Dr. David Zorko’s role as researcher also helps him become a stronger paediatric critical care physician, as his eye for the long-term effects impacts the decisions he makes in the ICU (Intensive Care Unit). 

For the first time on Healthcare Change Makers, our interviewee becomes the interviewer on a special second part of the episode! For the longest time, we’ve wanted to give our guests an opportunity to spotlight key people in their network. 

Dr. David Zorko interviews two of his mentors, Dr. Geneviève Du Pont-Thibodeau and Dr. Karen Choong, who share a collective goal of researching post-PICU care. With their combined expertise, they explain why research about this type of care is critical and share advice for hospitals on improving post-PICU care. And it’s a true indication of how healthcare is a team sport. 

Mentioned in this Episode

• McMaster Children’s Hospital
• McMaster University
• The Canadian Critical Care Trials Group
• Dr. Geneviève Du Pont-Thibodeau
• Dr. Karen Choong
• Ted Lasso TV Show
• The Pitt TV Show
• ER TV Show
• Noah Wyle
• Dr. Jacques Lacroix
• Dr. Margaret Herridge
• Dr. Deborah Cook

Transcript 

Imagine you could step inside the minds of Canada's healthcare leaders, glimpse their greatest fears, strongest drivers, and what makes them tick. Welcome to Healthcare Changemakers, a podcast where we talk to leaders about the joys and challenges of driving change, and working with partners to create the safest healthcare system.

Philip De Souza: Hello, everybody. We're so happy to have Dr. David Zorko, and he's going to tell us a bit about himself right now. This is a special episode, because we actually asked David to also bring on a couple people he wants to interview, so we're trying something new. First off, welcome, David. Thank you for joining us on the show.

Dr. David Zorko: Yeah, thanks so much for having me. This is quite a pleasure.

Philip De Souza: For those who don't know, tell us a bit about where you work and what you do.

Dr. David Zorko: Yeah, thanks. I'm an intensivist, which means I'm a doctor that takes care of critically ill children in an intensive care unit. These are children with serious and life-threatening illnesses, like serious infections, heart disease, lung disease, traumatic injuries, many others. I'm a pediatric intensivist at McMaster Children's Hospital, and assistant professor of pediatrics at McMaster University in Hamilton.

Philip De Souza: Oh, very good. Can you give us an overview of the focus of your research, and I guess what's the ultimate goal?

Dr. David Zorko: Yeah. Well, Philip, I might digress a little bit, but I'm really passionate about improving outcomes for children and families who survive their critical illness. My research focuses on their long-term outcomes. If I can tell a bit of a story-

Philip De Souza: Yeah, of course.

Dr. David Zorko: You can probably imagine that the focus of pediatric critical care for the longest time has been on reducing mortality, saving lives. That's obviously quite important. With all the medical advances over particularly the past 20, 30 years, we've become very good at saving lives. In fact, in resource-rich countries like Canada, less than 2% of children die of a critical illness.

Philip De Souza: Interesting.

Dr. David Zorko: Survival is, it's not guaranteed, but it's gosh darn, it's almost guaranteed. That prompted us to ask, what happens to children and families after their ICU stay? With mortality being so low, you can imagine that setting the bar for a good outcome, so to speak, well, that might not be the best indicator. That bar's pretty low. Guess what? We pulled back that curtain and looked at outcomes like physical function, cognitive, emotional, social health.

We found that more and more evidence that not all children are returning to their full health right away. This collection of problems and the health issues that children and families are experiencing after critical illness has been termed the pediatric post-intensive care syndrome, or something I just shorten as PICS-p. Why is this important? Why is this unique? There are lots of reasons, but you don't have a three-hour podcast today. I'm going to keep it to three big points.

One, children are not small adults. What's unique to children is these health problems will impact them while they're growing and developing. Some of these things persist over time and may worsen. You can imagine that that could impact a child well into their lifespan. Also, what's unique is that the diet of a child and their caregivers and family are inseparable and codependent.

Consequently, family members can also experience adverse outcomes related to their child's critical illness, but then that can further impact upon the child. Finally, you can imagine that critical illness is a really big event for the child and their family. There are so many things that happen to children as part of the critical illness, treatment, and recovery, and some of these complications or unavoidable consequences of that impact the long-term outcomes of children.

The goal of the research, and my research, and many others across the country that I collaborate with is, one, generate for our global PICU community evidence and knowledge about the types of issues children and families face after critical illness, build this understanding of what PICS-p is, identify the types of children that might be higher risk, and look at how we can positively impact upon those issues, both with what we're doing in the ICU, but also after. What interventions and practices can we implement to not just help children survive, but survive better?

Philip De Souza: No, I love that you broke it down for us listeners, for me and the listeners. That really helped. I can tell you have a great deal of passion in your voice. What sparked your interest in this research topic?

Dr. David Zorko: Yeah, that's a great question, and one that I get often and reflect upon. You can imagine that when I went into critical care, like many others, we did it because we like saving lives, we like doing cool procedures, we want to work in a fast-paced dynamic environment. That's totally true, but the inspiration really comes from the patients and their families. Some are surviving and thriving after their critical illness, and some are not.

Some have such serious chronic health problems that they require long ICU stays or repeated ICU admissions. Many of these survivors are becoming our future patients. Some patients and families, when they come back to us, they tell us stories that because they've left the hospital system, so to speak, they struggle to access resources to deal with some of these problems, until unfortunately they're bad enough that they end up readmitted to hospital.

I thought, why is that? Can we make that better? The impact is huge, not just for patients and families, but for the healthcare system as a whole. Potential significant impact on the resources we use, if we can more effectively identify and manage these post-PICU struggles. Colleagues of mine have done studies to ask patients and families, "After we know your child will survive their critical illness, what's the most important thing to you?"

The vast majority say that's the quality of their survival, their functioning and quality of life. That is the main outcome for them. I think that's how we next revolutionize our critical care.

Philip De Souza: Oh, very cool. I like how you brought in a high-level system perspective of how it helps not just the patient and the family, but system as a whole. What is the value of collaboration and partnership in achieving this ultimate goal you speak of with your research? While you're at it, are there any organizations or individuals you'd like to give a shout-out to for the support?

Dr. David Zorko: Yeah, well, we're going to talk soon, I think, with two people that I have close collaborations and partnerships with. I'm not going to square up a whole conversation now.

Philip De Souza: Okay, good.

Dr. David Zorko: Let me say this. I Googled this the other day. Did you know that there are over 4,000 Tim Horton stores in Canada?

Philip De Souza: Wow.

Dr. David Zorko: There are less than 20 PICUs in Canada. You can imagine that everyone kind of knows everyone in the pediatric critical care world in Canada. If you want to get any type of large-scale research done, we all need to partner together. The main network that we partner through in Canada is called the Canadian Critical Care Trials Group. Within that group, we actually have a specific subgroup or interest group dedicated to pediatric critical care.

What's nice about the larger trials group is, and it differs from other similar groups in the world, is that the Canadian Critical Care Trials Group is inclusive of both adults and pediatric ICU specialists, multidisciplinary team members, like pharmacists, nurses, and also patient family partners. You can imagine the degree of collaboration and excellence within that group.

We've actually also established amongst ourselves in the pediatric group, a network of PICU providers across Canada who are really keen on post-PICU outcomes and follow up with these patients. We'll be talking to Dr. Karen Chung and Dr. Geneviève Du Pont-Thibodeau later who are two members of this group. Finally, I have to say one of our most important collaborations and partnerships is really with our patients and families who partner with us in this research.

You can imagine this research is about them. It's for them. It is our duty to seek their input as researchers into how we do this in a way that's most appropriate, helpful, effective, sensitive to these families. You can imagine that some of them have significant struggles post-PICU. That's super important.

Philip De Souza: Absolutely. I love that you have the focus on the patient and family, because some would think, okay, let's all, let's get together and make this, come up with the plan making decisions, but no, you're including, and you have that empathy for those who you're serving, so I love that. At the start, you mentioned you wear a variety of hats. How has being a researcher shaped the kind of clinician you are?

Dr. David Zorko: Yeah, it definitely has shaped the clinician I am, in one way, because as a researcher, we kind of think in a certain framework. We're very curious. I like to use that Ted Lasso phrase, like, "Be curious, not judgmental." Because I have an eye for the long-term effects, it definitely impacts the decisions I make in the ICU to try to mitigate those effects. Knowing that when I do that, that's actually evidence-based contemporary critical care.

These are things, Philip, like ensuring our patients are not heavily sedated, but also not in pain or anxious. Being very intentional about the drugs we use, making sure we're engaging our physiotherapists and occupational therapists to mobilize our patients even when they're critically ill, making sure we're intentional about how we provide nutrition, making sure we protect their sleep. You can imagine, you and I sleep is probably very important if we don't get our, however many hours, for me personally, it's eight or nine hours, how grumpy are you in the morning?

Philip De Souza: Right, exactly.

Dr. David Zorko: Just think of children, like little infants. A third of what they do in the day is sleep. It's so important for their development. We want our child life specialists engaging them to fuel their development. We want music therapy, playing music for them. That's also just generally a good vibe in the ICU when the music therapist's around. All these things are really important. I think the other thing is when I examine my patients, depending on how awake or alert they are, I'll often be trying to do something to hold their attention.

I have a whole host of very horrible dad jokes, or at the very least, even when I don't think they're alert because they're either sedated or very ill, I'm talking to them, I'm using, I call it the late night FM DJ voice. I'm holding their hand. Probably something, if you saw me in the ICU, you'll hear me say to families when their children are critically ill is, "Despite how scary this all is, and it's super scary, there's lines, there's tubes, it looks very unnatural. That doesn't change the fact that you are still their parents."

I usually say, "All the mom and dad things apply. If you want to do something that your child would like, don't let these things be barriers. Let us help you make it happen. You want to sing to your child? Tell us. You want to hold your child? Tell us. You want to kiss your child? Tell us, we'll figure it out. Don't sit back and say, 'Well, no, I'm not going to do that now.'" There's consistent evidence that the top predictor for reducing many of these ICU consequences is family presence. Empowering and engaging them is super fundamental.

Philip De Souza: I love it. I love that you mentioned that helping parents remove any barriers or misconceptions of what shouldn't be done inside of a hospital room. That's really, we think about it, but now that you say it out loud, it's like, "Yeah, it's true." If I go visit somebody, I'm like, "Oh, can I touch that person? How do I say hello? Do I hug them?"

I love that you brought that up. Since I asked you about it, obviously, work-related, I guess, how has your two dual roles of researcher and clinician shaped the person you are on a personal level?

Dr. David Zorko: Yeah. You can imagine that the work that we do has a lot of emotional highs and emotional lows. We often have patients and families come visit us in the ICU after they leave. If they're having another appointment in the hospital, they come say hi. Seeing those children and families really shows our team the impact they can have. I find that really fulfilling.

If I can give an example, we had a little boy, and he had really sick lungs from a virus infection, so sick that we had to transfer him to another hospital to receive ECMO. I think many listeners will probably have heard of ECMO since the COVID pandemic, because it was commonly used, it was in the news, but for those that aren't familiar, it's a life support machine that basically takes the blood out of the body in large tubes, adds oxygen, and then returns that oxygen-rich blood back to the body to help the lungs rest.

He came back to our ICU once he was off ECMO. When he left the hospital after about three weeks of being in intensive care, our whole team remarked that you wouldn't have known the three weeks that this child has had in their life, because he walked out of the hospital skipping and jumping with his brother. That's the perfect example of the impact we can have. Those cases make me feel like, "Wow, we did this ICU thing pretty darn near perfect."

Philip De Souza: Oh, so yes, I did hear about ECMO, which I remember during COVID, but I also heard about it recently in a TV show called The Pit. I'm not sure if you've ever, you've watched the TV show, but they had a whole episode on it.

Dr. David Zorko: Oh, yes, Philip, I own all, gosh, what is it? 16 seasons of ER on DVD.

Philip De Souza: Oh, yeah?

Dr. David Zorko: I, yes, I'm a Noah Wiley fanboy, and I will say, although it's The Pit, he will always be Dr. Carter to me.

Philip De Souza: Okay. No, I've never seen ER, but The Pit, I was all over it. Actually, between you and I and our listeners, my goal is to manifest bringing Noah on the show and having him interview somebody, maybe perhaps you.

Dr. David Zorko: That would be the honor of my life, probably. I'm going to hold you to it.

Philip De Souza: Okay. Let's see if we can, I'm going to make it, try to make it happen, but let's see. My other question, I got so excited about it, I forgot where I was. David, what are some challenges you're faced while translating your research into evidence-based practices? How do you overcome these challenges, or perhaps, or even when others tell you about these challenges?

Dr. David Zorko: Yeah. Research is a Herculean effort. I celebrate every success, because to be a researcher, what you'll hear and what we'll talk about is the papers, or the grants, or the things we find. What you don't see, and what we don't talk about are the 10 to one ratio of failures that I've had for every little success. There's lots of challenges. When we think about evidence-based practices, where do these come from?

These come from scouring the literature, and collecting all the evidence available on a topic, and trying to distill that, and put that together, and synthesize that to something that healthcare providers can use. Every doctor every day can't go do a search about all the studies done on a certain topic to make a decision for their patient. Luckily, there are people, and it's actually a lot of the work that I do, they create evidence syntheses. Your listeners might be familiar with something called a systematic review, for example, or a scoping review.

These are two types of evidence synthesis that aggregate the best information about a certain topic. These are really time-consuming. People have looked into this and found that incorporating individual studies into some of these reviews can take two and a half to six and a half years from that study's publication.

Philip De Souza: Wow.

Dr. David Zorko: Yeah. By the time that the systematic review is, most of them are importantly outdated by two years, because new evidence has come along. Because it takes so much time to get there, you can imagine that updating them or having them as a living document is really challenging. They're so fundamental to informing evidence-based practice. What do we do about it? Well, I've actually worked with a team outside out of Ottawa led by Dr. Darren McNally.

He's also a pediatric ICU doctor at the Children's Hospital there. We've harnessed crowdsourcing. We use large teams to help expedite the work that's usually done by just a handful of people. For example, we did this review on pediatric chronic critical illness. It's kind of in this umbrella of post-intensive care syndrome. We wanted to see how people define this in the literature. When we searched, we did our preliminary search, casted a broad net, and we had just under 25,000 records to look through.

You can imagine that a couple handfuls of people looking through those is going to take a lot of time. We advertise this on social media. We presented at international PICU research groups. We recruited 28 members from 11 countries across the world to help us screen data extract. We were able to do all that in just 42 days. The power of that is not just that, not just the speed, but it, A, showed us, okay, pediatric chronic critical illness is a priority for the international community, because so many people wanted to help and participate, and it created an instant collaborative network.

Many of those crowd members have since helped us on subsequent systematic reviews. It kind of grows our global network. We've actually since gone a step further and done some of these evidence synthesis projects that have integrated machine learning as well into citation screening to help the crowd even more, and focus their attention on tasks that humans really need to focus on.

Philip De Souza: That's very motivating, I'm sure, for all involved.

Dr. David Zorko: Yeah. Yeah, it's really fun. It's really fun to see how it evolves. We're hoping to kind of cut that knowledge translation time window, make that window smaller.

Philip De Souza: Oh, that's cool. Before I get to the lightning round questions, which are, I'm going to spring on you, I thought this is a leadership podcast, and we've had your CEO, Bruce on, and he's a fantastic leader. We see you as a leader. That's why we called on you, David, to come on our show as well, a leader in what you do.

Along your career journey, I can hear from your voice, like I said before, you have this passion for making an impact, making change, and that's why you're a changemaker. Where did you draw that from? Is it from a family member, a mentor, your family, other peers who we'll be talking to later? Where did you get that energy from?

Dr. David Zorko: Oh, gosh, that's such a great question. I have never been someone in my life that hasn't given almost anything like 100%. Maybe sometimes that's to a fault. Like Philip, if you saw my garden in my backyard, you'd think you were at the Royal Botanical Garden.

Philip De Souza: Okay.

Dr. David Zorko: I don't just... Yeah. When I'm really into something, it's two feet in the pool, and whether I can swim or not, it's a totally different, a totally different thing. I have to admit, and because she's not on the podcast yet, we'll be talking to her soon, Dr. Karen Chung, she's been my research and mentor for many years.

She has always had this vision and pulse on the things that matter, and the passion she brings to research and the way she integrates that into her as a clinician and into the ICU, I just really strive to model that type of what I really think is exemplary and holistic care. We always joke that she's the Jedi master and I'm the Padawan, and I just try to hone that craft truly as an apprentice. She's had a huge impact on me and really motivates me to be that changemaker. She has done that in her career.

Philip De Souza: That's amazing. Maybe now I'll add one more serious question. Obviously, you've been in the system, and you're young, and so what advice would you give to other up and coming people coming up in healthcare no matter what role they're playing in the system? Is there any advice you'd give to them to kind of harness what you've harnessed, that energy, and that positivity, and that drive to make change with partners and collaborations, of course, and to serve the patients and families we serve?

Dr. David Zorko: Yeah, I think not surprisingly, the answer is you have to find something you're truly passionate about. Change is not easy, and change does not happen instantly. While you think something is the greatest thing since sliced bread, other people won't feel that way. There'll be many challenges along the route and many frustrations, and it'll be very easy to give up, and you'll be tempted. I've been tempted.

I've been tempted to say, "Is this worth it? I could be doing something and not be pulling my hair out at this point." I think making sure you're passionate about it, and knowing what the goal is, and like I said, seeing those patients and families, seeing the ones that are thriving, seeing the ones that are struggling, it constantly reminds me like, this needs to be better. This is a problem we have to solve, and we know that this is a problem across the world.

It's not just about potentially impacting care here, which starting locally is great, but it has a huge potential to really affect children that I will never see in an ICU. Just knowing that this will amount to something helps me keep the nose to the stone.

Philip De Souza: Yeah, no, that I love your value systems. I can hear it and how you're communicating the value of what you do here, how it's not just here in our jurisdiction, but it affects people across the globe ultimately. I love that, how you brought that up.

Dr. David Zorko: For sure, and don't do it alone. I know here, you and I are talking to me, but the people behind me in this journey that I could do 30 minutes of a podcast naming them all to get me here, that's the people that made this happen. Surround yourself with the people that motivate you, that inspire you, that you can be vulnerable with and say, "Listen, is this a dumb research idea?" Those are the things that ultimately have helped me be successful.

Philip De Souza: Oh, it's amazing. Okay, so now I'm going to flip the script and ask you a few questions. You can give one word answers or you can give as long as you want. They're easy questions, I hope so. David, what was your first job ever? Your first job ever?

Dr. David Zorko: Oh, my gosh. I was a piano teacher.

Philip De Souza: Oh, that's good. That's a good job.

Dr. David Zorko: Yep. I have my grade nine Royal College certification. Yeah. I was a piano teacher.

Philip De Souza: Very cool. It's funny, you actually kind of segued to this question, so finish this sentence, if you were not in healthcare, you'd be doing what?

Dr. David Zorko: Oh, my gosh. If I was not in healthcare, I would be... Oh, my gosh, Phil, this is a hard question. There's so many-

Philip De Souza: Well, you love gardening. Would you do something in gardening?

Dr. David Zorko: Gosh-

Philip De Souza: A landscaper?

Dr. David Zorko: I actually told someone recently that I would work in, I would work in a greenhouse.

Philip De Souza: See?

Dr. David Zorko: I would be like that person who waters, who helps you find, "Oh, hostas? Aisle eight." There's just something really fun about growing and propagating, and seeing things come out of the earth and be like, "Oh, I kind of did that," or, "I didn't kill that plant. Go me." Yeah, let's do that. I'll work at a garden center.

Philip De Souza: I felt that, I felt that. If you were given a chance to take a spin in Michael J. Fox's time machine from back to the Future, which time period do you feel you'd want to go? You don't have to give an exact date or year, but which timeframe, past or future, of course, or present, where would you want to go?

Dr. David Zorko: Oh, my gosh, the eighties. Although I'm a nineties child, my wife and I are musically stuck in the eighties. Our dog's name is Lennox. We've named her after Annie Lennox. I would just love to experience the culture, the music in person, those concerts in the eighties.

Philip De Souza: Yes, eighties are, I think, everyone's jam. My last question for you is if you could have lunch with anyone at all, living or dead, who would you want to sit down with and chat, and why?

Dr. David Zorko: Oh, gosh, that's a great question. I would like to sit down and chat with the lead singer of the Red Hot Chili Peppers. Anthony Kiedis.

Philip De Souza: Oh, yes, Anthony, yes. 

Dr. David Zorko: I don't know if anybody has read, it's many years now, he wrote a biography called Scar Tissue and talked a lot about his, a little bit tumultuous upbringing, and forming the band, and other health and personal issues he's had along the way. That was one of the first books that I read that I was like, "Wow, this is really interesting."

I would just love to sit with him and chat, and it was my favorite band as a small child. I have to admit what my parents were thinking, letting me listen to the Red Hot Chili Peppers as a small kid. They probably thought he doesn't know what they're singing about anyway. Yeah, that would be who I'd want to.

Philip De Souza: No, that's a good one. I'd be at the table next to you listening, that's for sure.

Dr. David Zorko: Amazing, amazing.

Philip De Souza: Well, David, thank you so much for sitting with us. Listeners, you stay tuned because we are trying something really cool and something new. When we chatted with David last, he said that we wanted him to bring on a few people who he collaborates with, who he respects, who has helped shaped who he is today. He mentioned, obviously, the both on this part. Stay tuned. We're going to have him interview and ask them a few questions.

Welcome back, listeners. You just heard from Dr. David Zorko. Now, we thought we'd try something new. When we chatted with David before we recorded, we asked him who in his life has helped him and has helped him shape his career and be who he is today? He mentioned a couple individuals. We thought, hey, David, let's bring them on the show, and you ask them a few questions. David, welcome back, and why don't you tell us who you brought?

Dr. David Zorko: Thanks so much. I'm so excited for this part of the podcast. I have the pleasure of introducing both Dr. Geneviève Du Pont-Thibodeau and Dr. Karen Chung to join me today. Maybe first we can start and you guys can introduce yourselves, tell us who you are, where you work, and what you do.

Geneviève Du Pont-Thibodeau: First, I'm very touched that you thought about me, David, but I'm Geneviève Du Pont. I'm a pediatric intensivist like David, and I work in Montreal at Sainte-Justine Hospital. That's, yeah.

Dr. David Zorko: Great.

Dr. Karen Chung: My name is Dr. Karen Chung. I'm a professor in the McMaster University Department of Pediatrics, and I'm a pediatric critical care physician. I will disclose that I knew and met David when he was a high school student, and so we have a long history together.

I've had the privilege of being his mentor since he was before even at medical school, and it just fills me with pride to be included in part of this conversation, and seeing what amazing work he's done in this field. Thanks for inviting me, David.

Dr. David Zorko: I'm really happy you both agreed to do this with me, because I've known both of you at different stages of my career. Obviously, Karen for a long time, Gen, for a shorter time. We've all kind of triangulated onto this interest of post-PICU care. In the opening part of this podcast, we talked about why we're looking at the revolution of critical care from survival to survivorship.

I have some questions about our work together, but maybe first I'll start it off and ask both of you, why is it so important that we're doing this now? Why are we looking at post-PICU outcomes and post-PICU care?

Geneviève Du Pont-Thibodeau: I think for me, it's really the next step of our work. I think there's been so much improvement in the way that we help kids survive critical care and critical disease, that now I think our priority has shifted, in terms of making sure that not only do they survive, they need to survive with a good quality of life. I think that's what's most important.

Throughout my training, I think that was my personal concern, that we kind of made sure they survived, but we didn't even know how well they did afterwards. I think all of us have been concerned about that. That's why we developed this follow-up interest, because we want to make sure that they survive in a good way and with a good life. I think that's why it's so important.

Dr. Karen Chung: The time is right. As Genevieve has said, we've become really good at PICU care, and now we understand that most of our children who come in with a critical illness survive. The time is right is because now, we've done a lot of research, not just about what happens in the ICU, but what happens after they leave the ICU. It's really quite striking to see that survivors don't necessarily do well after they survive their critical illness.

You think everything is happy and excellent, but really, children go through a trajectory where they have a lot of challenges with respect to recovery, and not just personally in the patient, but also the patient's family, because they're integral. I think that we've changed or evolved the model, not necessarily just changed the focus, but come to understand that critical illness is a continuum of care. It doesn't just start in the ICU. In fact, it starts before the ICU, and therefore, it should continue after the ICU.

I think what's exciting is we started out doing a lot of research about trying to understand what happens to children and in their recovery after critical illness. We've started to focus on interventions that can affect their outcomes beginning in the ICU. I think it's an exciting time to now look at how we can optimize their care after the ICU, what does that look like? Who should it be?

Who should this post-PICU care be targeted to? Ultimately, who should be providing this care? That's another challenge as well as we're going through this journey and trying to understand it.

Geneviève Du Pont-Thibodeau: Following what Karen said, I think ultimately, we have a responsibility to make sure that the care that we provide and the interventions that we do, we have a responsibility to make sure that the recovery from what we perform in the ICU is adapted. I think that's what the shift is, is that we feel that our responsibility no longer stops once they leave the ICU.

We really have to follow through on the interventions that we performed, and the care that we provided, and that our responsibility spans out for much longer. I think that's what this new, I wouldn't say generation, but this new shift in our community is, that's what's happening.

Dr. David Zorko: I love the points, Karen and Gen, that you've both made in this continuum of care. We and many others like us have spent a lot of time thinking about this. I know we're still doing work to better understand, but if you could paint a picture of what impactful post-PICU care looks like, how would you describe it? Walk me through what you see this future, this next generation looks like.

Geneviève Du Pont-Thibodeau: For me, I think obviously, it's still an evolving model, because we are still discovering what's happening to those children and these families. My model now is based on what we know, but I think it will change over time. I think it starts very early. I think about families still in the ICU that I can already know that the trajectory after will not be straightforward. I think with talking already and preparing them to the after ICU life would be very helpful to them.

I think the planning and the projecting can start quite early just in terms of making them prepare to the reality after. I think to me, ideally would be a very personalized care, where we would adapt our support based on how we know these families are doing. I think it would be really a multidisciplinary support, because I think the complexity of post-ICU is on different levels, both psychosocial, very, very, very psychological, actually.

I think there's a lot of support needed for parents and children in terms of protecting them from PTSD symptoms and anxiety. I think having psychologists and social workers, and even us talking to them is very important to monitor and to be present for them. Then also, I think one of the key aspects that would help these families is having a liaison or some type of connection with the hospital and the ICU.

I think part of the stress of these families after is to feel alone with their child and their new reality, and not really feeling that anybody understands the way we do, how their child functions and how their child is doing. I think them having a line or access to us when their concerns, at least for a few months after the ICU, would definitely be something that would provide them with comfort and reassurance, and then adding resources as we see their needs progress. Definitely a multidisciplinary care that starts early, and access to us for them would be how I would think it would work best.

Dr. Karen Chung: Even though I've been working in this space a long time, I think the issue is complex to describe what the most impactful post-PICU care looks like now, which is why I think the research that Genevieve is leading and that we're part of is so important is because the sequelae of survivors post-critical illness is heterogeneous, and it's complex, and it's multidimensional, and that doesn't only affect the patient, it affects the parents as well, and in fact, the siblings, the entire family.

I think that maybe to answer your question, really without us having the data, in other words, we're anticipating what the potential impactful care looks like, is that maybe best to describe it according to what impacts the patient, first and foremost, is that the care needs to be tailored to the patient. We are trying to understand who is at risk. In those patients at risk, what are the issues? How to detect it, screening the issues is complex, and we're intensivists. A lot of these things are emotional, cognitive, developmental.

We're experts in critical care. There is definitely a learning curve to how to risk factors and how to target the care to make an impact on their outcomes. Their outcomes are challenging. To teach healthcare providers to perform these screening tools is also challenging, and ultimately, it's challenging for the families. There's a lot of burden, and we have to be aware that asking them to go through their experience is in itself potentially traumatic.

Secondly, with respect to impact, I think it needs to be tailored to the environment. Clearly, one size does not fit all for all kinds of patients, and their resources, and their settings, and their background. One size definitely does not fit all depending on whether we are in a high income setting or a low middle income setting, because the risk factors are different. We may have, I think what's common throughout all settings is severity of illness and length of stay, and what that does to a patient's recovery.

What is not necessarily the same in all settings is the social determinants, access to nutrition, parental education, distance needed to travel. We only have the ability to study it here, but just to let you know that there's a lot of research going on in different settings with respect to that. Then maybe the third domain is impact on our resources for our institution. As I alluded to, I don't know who is best qualified to provide the post-PICU care unless we know consistently and how to comprehensively detect and screen for it, and then address it.

Again, as I said, a lot of these things are cognitive, emotional, there's a lot of PTSD that families and patients experience. Again, once you detect a problem, who is best able to provide that care? We're really very much in the discovery phase. We know what the problem is. Now, we're trying to detect the magnitude of the problem, and then hopefully once we determine that, we can try and, as Genevieve said, tailor the of care to the patient, their environment, and then ultimately, the resources available.

Dr. David Zorko: I like this. Thanks for both your really thoughtful responses. We're very much kind of at the front end of this, but we know these problems are happening. What's one piece of advice you would give to either healthcare providers, hospitals, or anyone in this space, seeing a child in their family post-PICU care? What's one piece of advice that you would give them on how they can improve post-PICU care today, or start to make that change?

Geneviève Du Pont-Thibodeau: That's a big question. I think for me, it's important that people understand that, because often when we discuss performing follow-up, we do get some resistance from our institution, in the sense that these children already have specialist follow-up and there's the people that are seeing different aspects of their care through specialized care. I think what we're trying to establish here and what's really important is not many people look at them as a whole.

That's why we're missing problems, because we're focusing on the infection that brought them to the ICU, or the heart condition that is still the problem that we're managing. No one takes time to look at the, it's not a complaint, is more a reality, but if we don't take time to look at outside of their organ dysfunction, there's a lot of things that are happening that are subtle, but that can create problems long term.

I think if we're more early in our detection and more aware of potential problems that might be more subtle to pick up on if we're a specialist, we can do good in terms of preventing issues down the line. I think looking at the parents as well is, for me, really important, because we're pediatricians, so our main concern is going to be that the child's health, but if we don't address parental distress and parental problems, the child will be affected by that.

That's also a challenge, because we don't have resources to support parents the way we have for children, given that we're more mainly pediatric hospitals. If we understand better the relation between maternal, paternal, anyway, family health, and the direct impact on the child, then if we could have adapt our care to really look at the whole family, I think that would be most beneficial down the line. I think ultimately, even if we feel like these childrens are being followed, they're not really being followed. That's what we're trying to say.

We really need to have a more global approach when we see them. That's where our role is is to increase this awareness. I think if we're more, if we detect early and put into place support early, even if that looks costly for institutions, I think down the line, that will be beneficial.

Dr. Karen Chung: The advice would be we definitely need to start with education. There's lots of evidence now, showing that there's a lack of awareness, not just even within the pediatric ICU. Not all our pediatric intensivists and our trainees and our healthcare providers in the ICU are aware of post-PICU sequelae, let alone the magnitude or probably the majority of clinicians looking after the children after they leave the ICU are not aware of post-PICU sequelae. We definitely know that that's the case for primary care physicians.

That's so important, because in our studies, we've understood that parents don't necessarily bring it up spontaneously. A lot of this is families experience guilt, they're afraid to say something, even the expressing the PTSD symptoms. There's a lot of education with which we have to do, but it can start simple, just as in our discharge summaries, just a paragraph or not even a paragraph, a one-liner saying, "Be aware of post-PICU sequelae." I think our role of our post-PICU follow-up team, our pediatric critical care response team, follows up our patients for 48 hours after they leave the ICU.

They have a key role in screening of our patients in educating the clinicians after they leave the ICU, even before they leave the hospital, that some of these sequelae persist, such as delirium, ICU-acquired weakness, et cetera, and educate the clinicians how to care for them. The other aspect is that, which I think we need to educate clinicians on, is that two thirds of our PICU population have complex comorbidities. This is our norm.

That's not just restricted to the PICU, this is what pediatrics looks like right now because, or hospitalized population, because we've been that good at providing advanced technology, lifesaving interventions to keep children with who previously may not have been able to survive and thrive, with the technologies that they need, and support to survive. I think there's a lot of anxiety and uncertainty that at least we've observed with clinicians beyond the PICU and caring for these patients.

I think we need to upskill our pediatric colleagues, nurses, allied health clinicians to care for children with complex diseases and comorbid conditions, as well as their post-PICU sequelae. Advice to the hospital, I agree with Gen.We are behind clearly other intensive care populations, critically ill populations have follow-up as part of their care. The neonatal population have been doing it for ages. There's very well-established NICU follow-up programs globally. There are also now well-established adult post-ICU follow-up programs that are very well accepted.

I think it's time for our institutions to invest and provide resources dedicated to this continuum of care. I said our patients are future patients. These patients who leave our ICU who have chronic complex comorbidities, predictably will come back to the ICU. I think it's time for the hospital to provide us with support and not make it an uphill battle for clinicians who want to provide this care, to be able to set up physical and human resources to be able to provide the care that these patients and families now need.

Dr. David Zorko: We're going to pivot a bit, because when I'm listening to us talk, this is affecting big change in the way we think about patients, our healthcare systems, and the work we've been doing together has been really amazing. Could you share with listeners, I highlighted it earlier that collaboration was super important across the pediatric critical care community when we take on these big ideas. Can you share with listeners what you personally take out of the collaboration that we've fostered? Has there been any a-ha moments?

Geneviève Du Pont-Thibodeau: Well, I think for me, it's essential. I don't see any other way that we could tackle such a large problem individually. I think what's interesting for us is that we all share the same concerns in very similar population in the similar healthcare system. I think in a way, it's very easy for us to collaborate. It makes a lot of sense. I can't imagine in any other way to do this, because the data that we need to collect, the structures that we need to modify, and the institutions that we need to push to shift our way of doing things is absolutely impossible to do individually.

I think as a group, we have much more strength, a much bigger voice, and much more power to change things. We'll also gather data faster on a broader scale and on a bigger magnitude. I also think we have very various expertise, and that gives us a broader reach in terms of what we're able to detect. Our team is medical, yes, but we also have neuropsychologists, we have nurses, we have physiotherapists. There's so many things that we need to look at that I think doing it individually would be actually not be possible. I think collaboration is essential. It's the future, and it's an absolute necessity.

Dr. Karen Chung: I agree with Gen so much. With respect to research, research can only be successful through collaboration. That's particularly true of pediatric intensive care, because first of all, it's a small community and then within Canada, we only have, let's say, 14 academic, if I recall correctly, very small number of academic institutions that have PICUs in it. We are poised to be able to collaborate with a dozen or more PICUs across the country.

You cannot do research in pediatric critical care now alone in single center. Plus, it's not generalizable. I think the success of the Canadian critical care community is that we are able to network together, because our community is small, and thankfully, we have shared interest and be able to prioritize what the research agenda isn't doing. It allows us to be successful with respect to getting grants as Genevieve and her team have done. We're competing with much larger populations against the adult ICU community, of course, of which there are many, many more adult ICUs.

Then I think again, the PICU community is relatively small globally, so this isn't a global area of interest, post-PICU care is, and because everybody is now recognized that how important it is, that there are many different centers and doing this kind of research, which I think is so essential, because we can learn from each other, try and figure out the best study designs, troubleshoot what kind of resources and challenges we can do to overcome doing this kind of research in different settings.

You asked, I think, David, to share what I may personally take out of collaboration and then what our aha moments are. By that, I mean I think you mean you and I, so I'll speak to that. I love when a student becomes the teacher and when the mentee now becomes the role model. I'll embarrass David a little bit, and I tell everybody he's the ideal mentee to have because he's driven, he's got all the characteristics to be successful.

To observe a mentee such as David develop a passion in an area of interest that I share, and then that now become an expert in this field, is the aha moment for me, especially when I'm able to learn from you and see how you approach things, formulate new ideas, and frankly, organize yourself. I'll share that with our listeners.

Dr. David Zorko: It's good that there's no video on this, because there's no makeup in this production, so I'm beet red right now and no one will get to see that. That's great. We were, in the earlier part of the podcast, Philip and I were discussing the people or experiences in our careers that have drawn us to be change makers in this field. Karen, I'll now reciprocate and embarrass you.

I spoke about how we have this bit between us that you're the Jedi master and I'm the Padawan, and we've been growing in that relationship both through research and through career. You both have had a positive impact on my career, but who helped positively impact yours, either in terms of mentors, or what experiences have stuck out to you that have helped shape who you are today?

Geneviève Du Pont-Thibodeau: For me, when I started my training in critical care, I cannot not name Dr. Jacques Lacroix, who you probably all know. Dr. Lacroix is a big pioneer in pediatric critical care, especially at Sainte-Justine. He did a lot of research more on transfusion medicine in the ICU. For me, when I started my training, he was really a senior researcher that was very accomplished, but also extremely available. I had no experience in research when I started my fellowship, and he had time.

I think that's what, he is the reason I even I would say made it, I wouldn't say that, but I continue this research path. I think research is extremely intimidating when you've never done anything research-wise. I was extremely intimidated, and I actually thought I would never enjoy it. Like he told me when I met him, it takes a long time to finally get it, understand why people enjoy research so much, but you need to put in the work and the effort, and go through step-by-step, and eventually, you will understand.

He was so present to support me that I really owe him everything. We have very, very different fields of interest, but my field of interest does come from doing research with him. He was looking at the impact of giving blood on mortality in children, and outcomes that were ICU in the ICU, because back his time, his mortality has improved significantly even during his period. When he started his research, mortality rates were much higher in the ICU. That was much more a focus of interest as opposed to now.

I think it's through doing research with him than may me start thinking about, let's look at after, because maybe looking at just the ICU outcomes is not sufficient. My interest did come from working with him. I think that was my initial very, very big important mentor in my life. Then more recently, and maybe on a lesser scale, but definitely Karen as well, and I was going to name also Margaret Herridge.

Margaret is a very giant researcher in the field of adult post-ICU care, and she's published so much on, and she's kind of the first one to raise the flag to say that there's something happening to these patients after ICU. She is really a trailblazer in that sense. I think she's the one that opened the conversation for the adults, and eventually made us start getting concerned for children.

Dr. Karen Chung: The people who have impacted me positively, I'll start with my mentees. Seeing you succeed, become independent researchers, strong clinicians and leaders in your own right, forming your own successful career path to me is why we do this. It's extremely gratifying and motivates me to do better, to stay present, to stay up to date, and to provide others with the same opportunities. Thank you both very much for that.

It's interesting, and I'm really glad that you mentioned Jacques Lacroix, Gen, because I don't know if everybody knows, but I will say that he's considered the father of pediatric critical care in Canada, and is a mentor to us all and a role model. Thanks for mentioning him. He reaches out to everybody in the beginning of their research career path, just to motivate us all and to encourage us.

I also am interested to hear that maybe we shared a similar experience, because I did not see myself as a researcher initially, but I have had the privilege of being mentored by amazing Canadian women in medicine and leaders in the field, such as Deborah Cook. I think I can credit to her that she kept encouraging me and pushing me forward to choose this career path. I don't know if she really appreciates that as much as I value what influence she had on me.

Similarly, Margaret Herridge, who gives everybody time. I just think that's just the amazing skill of a mentor who may not be formally your mentor, but Margaret [inaudible 00:59:47], as Gen has described, has just also personally guided me and many others in this career path. By just sharing her own lived experiences is so important.

Dr. David Zorko: I've really enjoyed our time together, not only talking about post-PICU care and why it's so important in this day and age of pediatric critical care, but also learning about how our careers drew us to this. I'll conclude with this one question that I was asked, so I thought I would pose it to you as well. How have your dual roles as a researcher and clinician shaped the kind of person you are?

Dr. Karen Chung: I think being a researcher definitely makes me a better clinician. I think being a researcher makes us curious to try and understand why something happens, to verify facts, to approach patient management with evidence-based care. I hope that being a researcher has helped me stay up to date with the best available evidence and to practice with that evidence.

Then ultimately, as Genevieve was saying, bringing the research to the bedside, doing something that can impact our practice in the field, and ultimately being part of perhaps shaping care and making a change. I love what you said about when you said, when somebody asks us to jump, we say how high? I think the dual role of being a researcher and clinician has made me a problem solver. I think to be more thorough and diligent, and to embrace the challenge, to make something complex more feasible and easy, not easy, just easy for me, but easy for everyone.

Then I think a good example of this is we have a CQI board or Continual Quality Improvement board, and we go through opportunities for improvement and with the whole unit to say, "Oh," people will kind of grade it and say, "Do you think it's easy or difficult?" I'm always the first one to say, "Oh, it's easy. We can do this." The other aspect of doing research is it's really made me try to always figure out how to do everything yourself.

Like a maitre d, like you own the restaurant, but you need to know how to wash the dishes, set the table, be the chef when the chef is ill, and bring the customers in. I think that also helps it. There's no trying to break down the barriers of hierarchy, and so that you can speak firsthand how to troubleshoot something. I just love that aspect of it. Research, we don't want to put people off research, but it is challenging. I love the challenge. You bring me the problem, and like David said, I love to try and figure out the solution.

Dr. David Zorko: Gen and Karen, thanks so much for being such great guests today, but also colleagues, collaborators, and truly friends. It's been so great to chat with you guys today in this setting and hear your insights. I'm sure everybody listening today will reap some of the really sage thoughts and advice that you guys have shared today. Really, my deepest thanks to both of you.

Dr. Karen Chung: Thank you so much. Thanks so much for involving us. I found this really fun. Yeah, it's just proves to us why we're able to collaborate so well together. Thanks for bringing us to the table.

Thank you for listening. You can hear more episodes of Healthcare Changemakers on our website, HIROC.com, and on your favorite podcasting apps. If you like what you hear, please rate us or post a review. Healthcare Changemakers is recorded by HIROC's communications and marketing team, and produced by Podfly Productions. Follow us on Twitter at @HIROCGroup, or email us at [email protected].