In this episode of the Society of Critical Care Medicine (SCCM) Podcast, host Elizabeth H. Mack, MD, MS, FCCM, speaks with Nadir Yehya, MD, MSCE, an attending physician in the Pediatric Sepsis Program and the Division of Critical Care Medicine at the Children's Hospital of Philadelphia in Philadelphia, Pennsylvania, USA. They discuss Dr. Yehya’s study, “Parent and Provider Perspectives on Short-Term Outcomes of Critically Ill Ventilated Children,” published in the September 2025 issue of Pediatric Critical Care Medicine. The study explores whether widely used composite clinical outcomes such as ventilator-free days truly reflect what families value most when their child is in the pediatric intensive care unit (PICU).
Dr. Yehya discusses how the project emerged from a long-standing question in pediatric critical care research: Are the outcomes we measure in clinical trials aligned with the priorities and lived experiences of families? Because mortality is low in pediatrics, composite short-term outcomes such as ventilator-free days, ICU-free days, and hospital-free days are commonly used. However, little is known about whether these metrics are truly patient- and family-centered.
Using survey data from parents and PICU clinicians, the study found strong agreement between parents and clinicians on the importance of minimizing duration of invasive mechanical ventilation. But parents and clinicians diverged on other short-term outcomes. Families ranked oxygen duration as more important than ICU or hospital length of stay, reflecting concerns about ongoing medical needs, missed work, and the possibility of going home on oxygen. Clinicians prioritized ICU and hospital days over oxygen use. Substantial variation was also found within both groups.
Dr. Yehya highlights the value of feedback from patient and family advisory councils in designing this type of research, explaining that such feedback informed the study’s instrument design and family approach. He calls for deeper investigation into post-discharge recovery, functional outcomes, and long-term developmental trajectories—areas families consistently identify as their greatest concerns.
Resources referenced in this episode:
Parent and Provider Perspectives on Short-Term Outcomes of Critically Ill Ventilated Children (Shannon MM, et al. Pediatr Crit Care Med. 2025;26:e1149-e1153)
Dr. Mack: Hello and welcome to the Society of Critical Care Medicine podcast. I'm your host, Dr. Elizabeth Mack, and today I'm speaking with Dr. Nader Yeha about the article, Parent and Provider Perspectives on the Short-Term Outcomes of Critically Ill Ventilated Children, published in the September 2025 issue of Pediatric Critical Care Medicine. To access the article, visit pccmjournal.org.
Dr. Yeha is an attending physician in the Pediatric Sepsis Program and the Division of Critical Care Medicine at the Children's Hospital of Philadelphia in Philadelphia, Pennsylvania. Welcome.
Dr. Yeha: Thank you for having me.
Dr. Mack: Before we get started, do you have any disclosures to report?
Dr. Yeha: I do not.
Dr. Mack: Okay. Well, thank you so much for this important contribution. Curious, how did you get the idea for this project, this manuscript, and how did you come to collaborate with these authors?
I'd just like to give other people an idea of how they might bring a project from idea to publication.
Dr. Yeha: Thank you. It's a good question, and it's a bit of a long answer, so bear with me. But I've really been fascinated with how we conduct clinical trials.
I started off as a basic science researcher, and I'm becoming slowly more clinical over the course of my own career. And so along the way, I picked up an epidemiology degree, and one of the areas I was interested in was clinical trial methodology. I'm also interested in observational study methodology, but one of the things which I think a lot of pediatric ICU practitioners will appreciate, but perhaps some adult practitioners as well, is how often we use composite outcomes.
And in PEDS, this is a big issue because mortality is relatively low. And so while that's good for the kids, it makes powering trials for any sort of meaningful outcome a little bit problematic. And so we very often rely on things like ventilator-free days, or hospital-free days, or oxygen-free days, or organ failure-free days, or something where you have to penalize mortality, but you're not really looking at mortality as the primary thing.
It's like a part of something else. And so the degree to which we use these is informed primarily by the fact that people started doing this in the 90s in a lot of ARDS and sepsis trials. And so we've just kind of continued with it.
But I've always been curious as to how much parents care about this. Like, do patients care about this? And like for adult patients, primarily, like you can ask them.
And then do parents care about this as a surrogate for like, would the patients actually care about it? And I guess the motivating question was, if my child was intubated for ARDS, and they had the option of being intubated for five days and on full-phase BiPAP for two days, is that better than if they were intubated for six or seven days and on BiPAP for one or zero days? And I'm just curious how providers felt about that question, how parents would have felt about that question.
So that's how this question came about. And the academic version of that is how clinically relevant or how patient-centered are the composite outcomes that we use very commonly in ARDS trials. And the more colloquial version of that is essentially like how much do patients care about the stuff that we seem to care about and how concordant is that versus how discordant is that?
Hopefully that answered what you were getting at.
Dr. Mack: Yeah. Thank you so much. And how did you come to collaborate with this team?
Was this an existing collaboration or?
Dr. Yeha: Some of them were existing collaborations. Some of them were new. Two of them are mentees of mine.
And I think that that's actually like a really big part of what I do in a teaching institution is try to bring along like, and I'm at the stage when I conducted this particular study that I had some degree of seniority. And so Megan Shannon was at the time, she approached me as a resident and applying for critical care. And she matched and became one of our fellows.
And she's currently now like a fellow at CHOP in critical care. And she was interested in a project that she could do during her time as a resident. And so she did the entirety of the legwork on this project.
And so we developed this question, we developed the questionnaire and she performed like actually going to parents at bedside and asking them these questions and conducted the study. And she was responsible for the primary writing and the data analysis of the manuscript. And so bringing her along, got her exposed to some degree of research.
It probably helped her get a publication, which may have made her a more attractive fellowship candidate when she was applying for fellowship. And in fact, it seemed to work insofar as that we matched her. So we must have liked something.
And Dr. Garrett Keim, I've worked with for about 12 years now. He also approached me 12 years ago as a resident for research. And him and I now have like 20, 30 publications together in the space of respiratory failure epidemiology.
So Garrett ended up being also a resident who became a CHOP fellow, who became junior faculty. And now he recently was awarded his K23 and a Mentored Career Development Award through NHLBI. And it's been just really, really phenomenal watching him grow.
He's a much better epidemiologist than I am at this stage of the game. And I credit him a lot with really pushing the field and defining like what we know about post-discharge outcomes in terms of readmission rates, how sick these kids get, what kind of respiratory morbidities they have after leaving the ICU. And his subsequent work is also kind of focused in this area of, are we analyzing trials the right way?
Are there better ways to do this? And what outcome should we be choosing when we power our trials? So that's how I started working with him.
Michael Harhay is an epidemiologist who I've worked with for about like five, six years now. Him and I published a statistical assessment of the properties of the right way to analyze ventilator-free days back in like 2018. And we've just kind of worked together on multiple studies since then.
We're co-investigators on two R01s together. And so we share a lot of academic interests. He's primarily, he's not a physician, he's a PhD trained, renowned biostatistician epidemiologist who's really pushed the envelope in terms of novel trial designs, Bayesian analyses, adaptive randomization schemes, ways to kind of maximally leverage data and patients in the critical care space, given the problems of critical care trials.
There's some nuances to doing trials in critical care that make it a little bit more difficult than some other disciplines. And so Dr. Harhay and I share that interest in trying to answer those questions. And I'm able to provide some pediatric expertise, and he has the biostats and epidemiology expertise to really complement that.
And so we've worked together for a while from there. So that was a established collaboration. And he's at Penn, so it's like, I just have to walk across the street to his office.
Dr. Mack: Lauren Ruffin Awesome. Thank you for that. And shout out to the trainees and the mentorship happening.
Beautiful story. Similarly, thinking about teams, I'm a big believer in the power of PFACs, Patient Family Advisory Councils, and would love to hear just a bit for our listeners how you worked with that advisory council to design the survey. What did you learn from including family voices in the research process itself?
Dr. Yeha: Dr. Harhay Oh, they're invaluable. I think that there are certain aspects that we've leveraged our Patient Family Advisory Council for other ICU research questions. And not all the families that are represented in them have had children in the ICU before, but they've all been hospitalized at some point or another.
And they're all like users of the healthcare system. And some of them have in fact had experiences with the pediatric ICU specifically, so are the CHOP-PICU. And so we've used them for prior studies in terms of how to approach families, what is the best way to ask a question using a combination of non-jargony language, but without talking down to somebody or making it look like you're talking down to them.
There's a tension that medically sophisticated families have, I find that you don't really want to take away all jargon from them because they've heard a lot of the stuff before. And so communicating information about their patient, about their child is one thing, but communicating information about research, which is a related and uses some of the same words sometimes, but is actually like a really different phenomenon. It required some sort of work with them to actually say, this is what we're trying to accomplish.
And these are our thoughts of the kind of questions we would ask, what do you think? And they gave us insight into how a family would hear those questions. And so in terms of in this particular study, we use them for instrument design and informed how to approach these families and what stage of the PICU hospitalization we should approach them in terms of when things could be potentially more stressful or less stressful, but still stay within the goals of the study.
And so in other studies, we've used them for similar sorts of things in terms of informing a research instrument or a survey questionnaire, the wording of certain things. And it's really helpful I find to get feedback from a stakeholder that is not always engaged, but is very much in the ICU is a major stakeholder in research.
Dr. Mack: Yeah, absolutely. Thank you. So in thinking about the things that we clinicians care about and trying to align with families on that, it sounds like you found that both providers and families both ranked ventilation duration highest, but diverged on length of stay and oxygen use.
And I'm just curious, were you surprised about this? You know, how do you think about this when you think about communicating with families? What's your takeaway there?
Dr. Yeha: I was surprised by this. And I think that has to do with the fact that I have not been a parent of a child in the ICU and I'm a parent. And so you have that perspective, but like interest in the areas where they agreed is everybody, families and providers, both ranked intubation and how long you were actually had a physical breathing tube in as the single most important thing.
They want that thing out. And so that kind of readily answered my question on a population basis of the 50 families that we surveyed. It actually seemed that many of them would actually value being only intubated for like five days with two days of BiPAP versus like being intubated for seven days to remarry.
And so that was a helpful answer. It straight up answered the question. Everybody ranked duration of invasive ventilation first, and they ranked the combination of invasive ventilation plus the NIV second.
And so on a group basis, that seems to be true, the two most important things they had. And then that's where things diverge. Parents then said that they valued how long a kid was on oxygen third, how long they're in the ICU fourth, and then how long they were in the hospital fifth.
Whereas PICU attendings ranked how long you were in the ICU third, how long you're in the hospital fourth, and how long you're on oxygen fifth. And I think this has everything to do with the fact that once a kid is on oxygen, we transfer them out of the ICU and we don't care. Or we're at least blind to the reality of a kid going home on oxygen, or a kid being stuck in the hospital on oxygen.
And so I think, whereas parents, that's additional time away from work, home, their life, their other kids. It's also the possibility of like having to go home on oxygen. So now suddenly there's durable hardware that's got going home with them in a way that ICU never really has the same tangible experience with.
Because there's only a minority of our subjects who are actually leave the ICU and we're the ones writing the prescription for the home oxygen.
Dr. Mack: Yeah. Fascinating.
Dr. Yeha: It kind of makes sense when you look at it looking back. But yeah, but a priori, if you're asking would I have guessed that, I would not have guessed that.
Dr. Mack: Of course. Yeah. And so along those lines, you reported poor intragroup agreement by way of low kappa values among both families and providers.
And so I'm just curious how you think about these sort of individualized perceptions of what we consider to be important outcomes in the PICU setting.
Dr. Yeha: That's a fantastic question. So even within families and providers, the error bars are actually fairly wide. So the rankings of one, two, three, four, and five came out in terms of group averages, but they did not like actually bear out with really tight error bars.
There was actually a fair amount of disagreement within the family group and within the provider group that suggested that there's a lot of individual variation in terms of what any given person values. The purpose of this was to kind of establish that ventilator-free days is a valid patient-centered outcome, or is at least more so than is hospital-free days or ICU-free days, because those rank the worst for parents, even though they're ranked a little bit better for providers. But that the duration of intubation and duration of intubation plus NIV on a population basis had some face validity of actually being relevant to families.
And that was actually the main goal of this study. And fortunately, it also had relevant to PICU providers. So that means it has face validity for two sets of stakeholders for use in future studies.
The individual variation was interesting. A lot of families, their major thing that they were looking for was actually post-discharge outcomes. What they want to know is, is their kid going to play soccer again?
Are they going to be able to play soccer ever? Are they going to be able to play soccer, but with an inhaler? Are they going to not actually have the respiratory capacity to play and exercise and breathe the way they were before?
So there's very much a return to baseline, which our study, because it was focused on like, is ventilator-free days a valid short-term outcome? It wasn't really set up to answer. But I think a lot of the heterogeneity in terms of the parent response actually stems from that uncertainty, that uncertainty of like, well, you know, you're talking about short-term stuff, and I guess I'll rank it for you.
But a lot of the short-term stuff is not my major headache. My major headache, the thing that keeps me up at night is like, when am I going to get my kid back? And so I think what this opens up for us is that while vent-free days may be a more valid short-term outcome than some other outcomes that you could choose for like an ARDS trial, the true patient-centered outcomes have much more to do with post-discharge return to function.
And that is a relatively unexplored space in pediatrics. I know adult ICU has the entire framework. Pediatric ICU is starting to have a pediatric post-intensive care syndrome framework that is being developed with like seminal work being done by other investigators all across the country and all across the world looking at post-discharge stuff.
But the epidemiology of post-discharge return to function is very much a black box for us. And I think that future studies, even if they're not necessarily powered for this, like it is important for us to start asking these questions as to like, how long does it take these kids to return to baseline? Do they return to baseline?
Are they like one grade level behind? Are they two grade levels behind? Are they physically developing at the way that they're supposed to be?
Are they running around playing soccer or are they not? The entire trajectory of their upward development changed. One of the major differences, and I think the framework of pediatric post-intensive care syndrome versus adult is that the median age of an adult going into the ICU is like 60.
And there are some declines that are kind of expected just through age. And critical illness impacts the trajectory and the slope of that decline that is already kind of happening just because we're getting older and we're accruing comorbidities. Pediatrics is the exact opposite of that.
Like kids are developing upward. The median age of an ICU admission is like two to four years. Your kids should still be getting bigger, stronger, faster, smarter.
And critical illness hits that trajectory in the exact opposite slope. Your kids should be escalating. And the fact that some kid like ends up back in school, okay, but is not at the same grade level that they were at, that's a problem.
That's something which is a different framework than like an adult who has a decline, but there was some degree of expected decline anyway. And so that has always fascinated me in terms of post-discharge outcomes. Like pediatrics is on just a completely different slope.
And so the way we have to frame post-intensive care syndrome is different.
Dr. Mack: Yeah. Thank you so much. As somebody who's writing a paper right now with a secondary endpoint of ventilator-free days, reconsidering, you know, just everything that we do because obviously this type of important outcome will require an entirely different type of infrastructure on our end as researchers and just a different way of thinking, which I know many people are already in that space.
But yeah, this is a much broader, longer term proposition. Yeah.
Dr. Yeha: And we don't necessarily even have to do it all by ourselves. We can like, NICU has a really good model of like following some of their NICU graduates over time, but they also partner with pulmonary. They also partner with other specialties that maybe are better equipped than us at some post-discharge long-term follow-up kind of things.
Dr. Mack: Awesome. So I'm curious, what are your next steps? You know, I'm thinking through how this impacts you at the bedside, how non-English speaking folks or multi-center cohorts to see whether these hold across diverse populations.
Just curious what your thoughts are.
Dr. Yeha: No, those are fantastic questions. I think the first thing that this established was the validity of ventilator-free days as a short-term outcome for, in a single-center institution of 50 families and some number of providers, right? And so I really would emphasize that the conclusions from this are fairly constrained by design.
It was a small study and we only wanted to answer one specific question. The broader question of what I'm most interested in is very much that, in the stuff that we've been talking about with respect to what does matter to families and how well are we currently measuring those things? And a lot of what I'm learning from this, and this came from a lot of the commentary and the free text that a lot of the parents would actually write into the survey that we gave them of like, I really wish you would ask this.
And it was almost invariably like a post-discharge outcome kind of thing. What I took from that was actually very much that. I feel like the short-term question may have been answered and that was interesting for me.
So the generalization of that is less interesting to me than actually developing the post-discharge part of this. I think we need to understand a better epidemiology of post-discharge outcomes in pediatrics. Many people have tried to do this and I'm not the first guy to say this.
I think I have to say that for like 20 years, people have been talking about like, no, we need to follow these kids and see what's happening. Now that survivorship is improving and mortality is improving, we should see what's happening to these patients. The areas where, and there have certainly been advances in this, like the lab study in sepsis and things like that, where people have tried to follow these patients.
One of the things I've noticed is problematic is the differential follow-up that you get. It's hard to follow patients outpatient in ICU framework if you are not set up to do it. And so you may have like, you know, 60, 70% return to clinic visit at like three to six months, but by six months to one year, you're down to like 20, 30% people returning to visit.
So you really have a huge drop-off. This is also known in other post-discharge follow-up studies. And the way I would actually take this is that like parents clearly care about this.
Okay. But making parents do research on our terms, that is to say, I need you to come back to the hospital and I'm going to do some tests on your kid and do some blood work and things like that. And they are nine months out.
And if they have a very sick kid, and there is no value added for them coming back to the hospital, and that kid still has comorbidities or still has like residue from their hospitalization, but there's no value added. All I'm doing is like checking their PFTs or drawing some blood. And they may not see an advantage to coming back and paying for parking and taking a day off of work and school to do this.
And if the patient is well, and they actually did recover to baseline, that is also informative, but they also now have no incentive to come in and actually do that follow-up and say, yeah, this is great. Telephone follow-up doesn't fully solve this issue. It partly solves this issue, but it's limited in the kind of data you can collect when you can't examine or test a patient in front of you.
So my direction that I actually want to take this is actually try to design ways where we can actually do post-discharge follow-up on the parents' terms. And whether that's probably some combination of asking them, would you rather come back for a visit? Or do you want to be contacted by Zoom?
Or do you want to be contacted by a home visit? Or can I draw blood at your home visit? Would you rather not?
Or would you rather come in for that? Would you rather do these tests in our clinic or in your house? And I think one of the ways to get a real description of the epidemiology of post-discharge outcomes is actually to stop making patients and families do research on our terms.
So I think that is the direction I would like to see this work go.
Dr. Mack: I'm sure you will get an amen from the patient family advisor world on that as well.
Dr. Yeha: It is kind of a lesson of talking to them, is like kind of realizing when you're in the ICU, certainly your kid is super sick, and there's a clear loss of control that parents see and feel, and it messes with them. And it would mess with me if my child was that sick. And there's things that you're able to feed them, address them, and now suddenly you can't.
And so you latch on to whatever pieces of control you have, and that includes how you're approached and how you're talked to in the ICU. And giving parents some of that control back for things that are somewhat artificial, like there's no reason why I should be doing research nine to five, Monday through Friday, which is the exact same time that those parents and those kids are also busy. They have things going on in their life.
Why would my constraint become their problem? And so maybe it shouldn't be. And I think that the more we think about it that way of like, this is a valid stakeholder who needs to be engaged in this process.
And I need them more than they need me. So how can I engage them? And I think thinking about them that way is like a very helpful approach that I would like to try to be more thoughtful and purposeful about.
Dr. Mack: Thank you so much. Anything that we didn't touch on that you wanted to make sure that you mentioned?
Dr. Yeha: I'm really proud of the fact that two of the authors on this started off as residents who reach out to a picky faculty to do research without necessarily knowing precisely what they wanted to do, but they want to do something. And then actually going through a process of how do we ask a question? And then we're asking that question, and then we're doing the work, and then we're taking a project from start to finish.
I cannot underemphasize how important it is for both mentees who have an interest to find a mentor who can help them with these things, and how important it is for mid-level and senior people to be available for the next generation of scientists. Because you're not going to do this stuff forever. And I mentioned that Dr. Shannon is a little bit more junior than Dr. Kaim is, but I mentioned earlier that Dr. Kaim has already surpassed me in terms of coding, epidemiology, biostatistics. And that is exactly what you want to see. The stuff that I grew up learning how to do, and I trained myself how to do, and went to school for, he is growing up in a different generation and trained himself in a more advanced version of all those things. So the way the science moves forward is not me, who's now very busy and senior, trying to learn what the new kids are doing.
It's actually training the next generation who actually grows up in the new generation of how to do epidemiology, how to ask causal inference questions, how to do more sophisticated, complicated analyses. And that's just this example. But I think that that is generally a truism.
The mentorship is a key part of this game, and it's the way to actually really move the field forward, is to have young, fresh ideas, take advantage of their enthusiasm at that stage, and having them learn new things, new, better ways of doing things. And I think that that's incumbent on both the mentees and the mentors to keep those relationships.
Dr. Mack: Awesome. Anything else?
Dr. Yeha: No, I think this was great. This was super fun. Thank you for having me.
Dr. Mack: Yeah. Thank you for making the time, for doing this important patient and family-centered work, and for taking the time to get it out there. I really appreciate it.
Dr. Yeha: I appreciate you guys. Thank you.
Dr. Mack: This concludes another episode of the Society of Critical Care Medicine podcast. If you're listening on your favorite podcast app and like what you heard, consider rating and leaving a review. For the Society of Critical Care Medicine podcast, I'm Dr. Elizabeth Mack.
Announcer: Elizabeth H. Mack, MD, MS, FCCM, is a professor of pediatrics and chief of pediatric critical care at Medical University of South Carolina Children's Health in Charleston, South Carolina. Join or renew your membership with SCCM, the only multi-professional society dedicated exclusively to the advancement of critical care.
Contact a customer service representative at 847-827-6888 or visit sccm.org/membership for more information. The SCCM podcast is the copyrighted material of the Society of Critical Care Medicine, and all rights are reserved. Find more episodes at sccm.org/podcast. This podcast is for educational purposes only. The material presented is intended to represent an approach, view, statement, or opinion of the presenter that may be helpful to others. The views and opinions expressed herein are those of the presenters and do not necessarily reflect the opinions or views of SCCM.
SCCM does not recommend or endorse any specific test, physician, product, procedure, opinion, or other information that may be mentioned.
