Communication and Common Sense

[00:00:00] Speaker A: Presented by Feed Matters, with host Jacqueline. [00:00:05] Speaker B: Peterson and Dr. Haley Estrom. Feeding does Matter. Hello, everyone. Welcome to Feeding Does Matter, a podcast where we get into the nitty gritty of research in the pediatric feeding field and especially centered on patient and family research. So. So, Haley, how are you doing this morning? [00:00:28] Speaker C: I'm doing pretty well. Jaclyn, how are you? [00:00:31] Speaker B: I am doing wonderful. I'm really excited to get to our conversation today. Today we have Dr. Richard Noel with us, who has been a longtime champion and supporter and just overall strategic guide for Feeding Matters. Richard and I met when I was at Feeding Matters early on. So I started with feeding matters around 2013. He had been there a little bit before that as our medical professional council member, and then really his background is pediatric GI and has really taken us that Feeding Matters to the next level. He was a key part of our PFD consensus meeting and also a key figure in our PFD and ARFID work, as well as our medical director in a volunteer capacity for the last several years with this tenure ending right now. So, Richard, excited to have you. Thanks for joining us. [00:01:27] Speaker A: Thank you. I listened to the podcast you had with Dr. Praveen Godet. You guys called him, like, the father of PFD or something like that. I'm kind of more like the fun uncle of pfd. [00:01:36] Speaker B: Exactly. That's why we have you on, because you're the fun uncle of pfd. I love it. [00:01:46] Speaker C: That is perfect. So I can jump right into our first question if we're ready. [00:01:51] Speaker A: Go for it. [00:01:52] Speaker C: Okay. So this is always a really fun question. I love to know how people initially became to be involved with feeding because it's a little bit of a. An initial specialization of practice. So how did you initially become to be interested in feeding and what drew you to specialize in that area of the field? [00:02:16] Speaker A: Yeah, I mean, I think that's a. It's a fun question. I think everything comes down to kind of being at the right place at the right time, I think. And for me, that was being in Cincinnati doing my GI training 2001 to 2004, and the people that I worked with in GI that I got along with the best that I found their work most interesting, most exciting. And things that I wanted to emulate were people that work primarily in upper GI tract disease. And by the time I got to Cincinnati, Colin Rudolph, who was also like a seminal figure in this, had left and he went to Milwaukee, but he had left sort of a system that came together with a lot of people in ENT and pulmonary for interdisciplinary or multidisciplinary care. A lot of this stuff probably happened in the 90s, and that was before I was there. So I'm not sure if the history is going to be absolutely perfect. But I think the broad strokes that I understand are Robin Cotton, who's a very famous ENT surgeon there at Cincinnati, he was getting a lot of like, second, third operation referrals for airway repairs in small babies. A lot of these were former preemies that had really bad airway problems that had failed surgeries at different places. One of the most brilliant things that Robin Cotton figured out is that sometimes it was not necessarily a surgical problem, but it was some other problem in the body, whether it's in the lungs, the upper GI tract, some other place that was impacting the surgical outcomes from ent. It's not that the failed surgeries were because of a surgical problem. It's because all these other surrounding factors were not being addressed. His brilliant move was to start was probably one of the first aerodigestive centers, brought in pulmonary medicine, brought in gi, and that was Colin Rudolph at the time, brought in speech pathologist, pediatric surgeons. Then every patient that would be referred would be seen by everybody. That's where the concept of the so called triple scope, where people came in at the first assessment, they had a flexible bronchoscopy to get fluid from their lungs. ENT did a rigid bronchoscopy to look at their airway. They had an upper endoscopy. Then they put all that information together and figured out, these are the problems. Let's address these problems. Then wouldn't you know it, surgical outcomes were way better. The AORTH digestive center is still going. It's, you know, it's probably one of the leading aerodigestive centers in the world. And I think at your upcoming Feeding Matters meeting, Rachel Rosen will be there. And then she took that idea to Boston. And they have the same idea in Boston. And what they have done is they've collected tons of data everywhere. You can collect data on everything. They've collected more data and they've taken that concept and brought in, you know, much more information to it. But where the feeding center came in or feeding disorder center was that that became, I think, like a parking spot for some of these kids that were not surgical anymore. But we're still not quite ready to be sent off, you know, free. So a lot of these kids still were kind of riding gastrostomy tubes. A lot of them had a lot of problems with swallowing, feeding sometimes, some nutritional problems, some airway problems, but they were not surgical patients anymore. So I think Colin started to follow a lot of these kids and that kind of became the feeding center. At first it was just, I think, an offshoot of the aerodigestive center. But then gradually I think he started to bring in psychology into it. They started some inpatient tube weaning stuff that was kind of, it was not quite big time yet, but it was there. It was. A lot of these were done like one of kind of, kind of cases. But I think that started the nucleus for what he was able to put together in Milwaukee. So he went off to Milwaukee and put that all together. And then when I finished my training at Cincinnati, I had the most fun in working with this population. So I just followed him there and that's how, you know, I ended up where I am. [00:06:43] Speaker C: That's really cool. You're an MD, PhD, right? When did the PhD come in and what was your PhD on? [00:06:55] Speaker A: Yeah, so when I was applying to medical school, I came across, you know, I was doing basic science research when I was in college. Okay. I was working in a lab and I had a lot of fun with that. And I became aware of this concept of the MD PhD programs at some medical schools. The program that was in Dallas, which is the one I went to, the way it works is you do your first two years of medical school in the summers, you're doing rotations and labs, doing scientific stuff. And then when your classmates go off to third year of med school, you switch over to grad school full time. [00:07:38] Speaker C: Okay. [00:07:39] Speaker A: So I was a full time grad student for four years plus the summers before, like in the, the leading three summers before. And, and I got my Ph.D. in basically is biochemistry and cell biology. And then when you finish that, you go back and you finish med school third and fourth year. But it's always fun because by then your senior residents are your initial classmates. Because it's like four years later. Yeah, yeah. So a lot of my senior residents were my classmates, which is always fun because you're, you know, they try to act all smart and you go, you're not that smart. I remember when you blah, blah, blah, blah, blah. [00:08:27] Speaker B: But yeah, that probably allows you to bring an interesting perspective to the work. And that's why I think I've always liked, really appreciated about our conversations about this work is you do bring various perspectives and you're able to articulate it really well. [00:08:41] Speaker A: And I think when I, when I left grad school, that was the last science I did. I mean, I. I've still participated in science and clinical research, some translational research, but I have been out of basic science since I left grad school. It's just not something. I mean, I was able to do it, but it was just not fun for me. [00:09:00] Speaker C: And it's really like bench. [00:09:03] Speaker A: Yeah, no, it was the real deal. And there is a game to it. You know, not only do you have to be really smart and really hardworking, but you have to be incredibly good at communication, verbal and written. You have to get people excited about your work. You have to be politically active in the right study sections, the right review committees, the right whatever. So there's. There's a big game to being a successful scientist that I was really not into because I know a lot of people whose science was tremendous. They were just not exciting communicators, and they just never advanced. But I had a great role model. The guy I did my PhD with, his name is Chris Newgaard, and he's probably one of the best scientific communicators I ever met. And he was able to gain tremendous traction just off his communication, get people excited about his work. Kind of like Jacqueline. [00:09:55] Speaker B: I mean, it's so funny because you talked about communication and I was thinking about, like, oh, I mean, that's so much of what we're trying. Trying to do at Feeding Matters is, like, really communicate these complex things and then bring people together that are working in silos and trying to get them to communicate with each other. [00:10:09] Speaker A: You can have tremendously good ideas, but if you can't get people excited about them, it's not, you know, you're not going to go very far. [00:10:16] Speaker B: Yeah, that's so true. Well, I mean, I think that leads us to the next topic that I wanted to really talk about and dive in with you, which is the PFD ARFID work that's really taken over our efforts in these last few years. You know, when we first came out with pfd, we thought it would be above and beyond. And then we realized a few years ago that we really need to dive in a little bit deeper and get the PFD and ARFID world talking to one another in order to better impact outcomes for children. And so talk to me a little bit about your thoughts on PFD and arfid. You wrote one of those. The first papers in really Diving in and that pediatric GI perspective of PFD and arfid, and that was a foundational paper that we used when we were meeting as a consensus group together with you and the others. [00:11:02] Speaker A: Yeah, that's a real interesting one. I think one of the interesting things that people may not realize is when we were coming together for that PFD consensus definition, was that 2016. 17. [00:11:14] Speaker B: 2016. [00:11:15] Speaker A: Yeah, 2016. Arfid was three years old, maybe. [00:11:19] Speaker C: Yeah. [00:11:20] Speaker A: And I don't think it was mentioned more than once or twice in that whole discussion about PFD kind of thing. [00:11:26] Speaker B: Yeah, it wasn't so significant. [00:11:27] Speaker A: It was not. It was not a driver. It was not anything that we all kind of knew about or paid attention to. I think the people that were more in the. In the mental health were the psychologists who were there probably were a little bit more familiar with it. But. But just peripherally, because, I mean, I think ARFID was never intended to be used in conjunction with any other diagnosis. So you can't talk about ARFID in kids with celiac disease because very specifically in their definition says this can only exist in people that don't have anything else. I think the original definition of ARFID meant to target those kids that looked like they had anorexia, but they didn't have the body image dysmorphia and they were otherwise totally well. It was strictly a mental health issue where you had to work on whatever fear or anxiety or ideas about eating that they had that were not body image dysmorphia through a mental health therapy capacity. So now when you're seeing, like, publications talking about, you know, ARFID and Crohn's disease, ARFID and this, ARFID and that, those. It just doesn't jive. It doesn't fit the definition because, again, it was never meant to be in a medical setting. [00:12:49] Speaker B: Yeah. And I wonder too, if it's like they. I almost wonder if the eating disorder world was similar to us in that they were saying, we're seeing these kids that have this weird thing and there's no real name for it them, and we're going to just call it this and then exclude everything else that it is not. [00:13:06] Speaker A: Yeah. So, yeah, no, I think that's basically what happened, because there was really nothing else until the PFD definition came around. I think one of the genius things, and again, I think a lot of this is just kind of luck in a way. The PFD definition is as incredibly broad as it can be. You can fit anything into PFD definition, like, anything. The ARFIT definition is as narrow as you can possibly make it. It's very strictly, basically anorexia without body image dysmorphia and nothing else. So I mean, that's a major. [00:13:45] Speaker B: That's funny because a lot of people think ARFID is really broad too. And I think it's within the parameters of a mental health diagnosis. [00:13:53] Speaker A: Maybe. Yes. I mean, they can talk about the broadness between it's like fear or anxiety or sensory based or whatever, but it's still kind of a very narrow playing field, especially when compared to pfd, which is an infinite playing field. So I mean, that's a, that's a major difference. And I don't think we planned that. I think it's just when we made the definition, we just made it as broad as possible because we had to fit in, you know, four distinct pillars. [00:14:26] Speaker B: Yeah, I think it's the multidisciplinary nature that made it infinite in that way, as you're kind of describing completely now. [00:14:32] Speaker A: The other thing that's important about ARFID though is, you know, I think the researchers in the ARFID world have done really good work, you know, especially defining, you know, types of cognitive behavioral therapy and all that that are more helpful and all that stuff. And I think all that stuff needs to be acknowledged. And it fits neatly under the mental, under the psychology pillar of pfd. So I don't think they're distinct, like you know, one or the other. This is for arfid, not for pfd. It's all pfd. [00:15:04] Speaker B: Well, and that, that's what was, I think, interesting in going into the meeting for PFD and arfid originally in 2023 was, you know, everybody coming at it from their various perspectives, really trying to figure out like, where is the overlap, is it 100% overlap of both and. Or is there like something distinct and isolating from either? And I know we've got a lot of still work to do in that regard, but kind of tell us about how your thoughts have formulated both in like kind of starting the paper, that original paper, then the consensus meeting and then even second consensus meeting in future of the field. What you think might happen as we grow in this effort. [00:15:46] Speaker A: I mean, I think, you know, several different things may happen. I mean, you know, the ideal would be if, you know, all of a sudden there's a paper that comes out in the ARFID world saying, okay, ARFID is now the psychology pillar of pfd. I don't think that's going to happen though. [00:16:07] Speaker B: Yeah, I was like, don't think of that. Well, I don't Think it happened. [00:16:12] Speaker A: So probably, I think the work that you're doing, getting a couple of publications out, consensus, bringing in some of these leaders like you mentioned, Will Sharp, you know, it's going to lead to at some point in the evolution of the ARFID definition, which will continue to be evolving. At some point there's going to be a section there that says, you know, if somebody has medical issues or whatever, you know, the definition of PFD may be more appropriate. And I think that's probably what will happen because it, you know, it's silly that it's not there yet. Or, you know, the third possibility is that they will never acknowledge PFD and it will continue to be like some kind of silly kind of thing. But, you know, the problem with that is that I think people misuse the definitions a lot just from lack of understanding, of lack of ever reading them. I see that a lot in, like, the medical world where, you know, I kind of get a new patient and I see in the notes from their primary care provider or an occupational therapist or somebody that says, well, you know, it's very possible that this kid may have the arfid. [00:17:27] Speaker B: The arfid? [00:17:28] Speaker A: Yeah. I mean, something like that. [00:17:30] Speaker B: So funny. [00:17:31] Speaker A: And then you're just like, no, no, no, it's arfid. Okay. And then you just kind of start over and, you know, the parents and, you know, started making a plan and, you know, but, but I see that all the time and, and I think it's just kind of misuse of, of stuff that you just don't understand that well. [00:17:51] Speaker B: And, you know, we finally have a name for something that you don't understand well, and that's what we've heard from the primary care population for a while is that they didn't know what to call these kids. Um, and they just started calling them arfid. And instead of now having a better understanding of both ARFID and PFD and how it could evolve in, into arfid, I guess it's an educational opportunity. [00:18:17] Speaker A: It is. [00:18:20] Speaker B: I think that's why in bringing the fields together, that was, for me, like, such a value is like, okay, now we've had this struggle of all these wait lists and like, limited educational pathway for people, limited specialists, limited all these things. If we have a whole other field out there, like, we need to be working together and maybe there's more opportunity to better service these kids and families and maybe prevent them from becoming adults that have had this, like, traumatic history of feeding problems. [00:18:53] Speaker C: Yeah, I, I do feel personally I feel good about what we had in that latest publication with the US Based consensus about saying, you know, middle childhood and younger do consider the PFD diagnosis. [00:19:15] Speaker A: Before middle childhood and especially, you know, any type of medical history. Right. Like you need to preemie if you. [00:19:24] Speaker C: Do the skill assessment. [00:19:27] Speaker A: Yeah. I think one of the big problems in the ARFID world is, you know, the lack of a standardized screening for ability. You know, at the second consensus meeting that was just with the psychologists, you know, one of my colleagues here at Duke, Nancy Zucker, I mean, she's done tremendous work and trying to kind of, kind of bring concepts from cognitive behavioral therapy down to even younger and younger kids through some of the work that she's doing. But when I ask her, you know, how do you screen your kids for the ability to do things? You know, she says, well, all I have is, you know, if they can eat a peanut butter sandwich, they're good enough. And I think to a large extent that's true. But I think when you talk to some of the skill specialists, you can just see their blood pressure kind of going up when they go. There is so much to assessing somebody's ability that goes beyond can they do this fairly straightforward task. So, yeah, I mean, I think in that world, coming up with a more useful screen for do you have the minimal abilities to do what we're asking for you to do? Because if you don't, then obviously any kind of therapy that we work on is just not going to work because we're asking you to do things you can't do. [00:20:49] Speaker B: Well, that's, I think, is good about it in the sense that, like now there's this awareness, cross, kind of diagnostic, cross field, cross discipline awareness. And that's the original goal of PFD in general was like totally talking the same language. Can we start talking about what is function and what is functional and. And how do we back into assessing function? I think is still an ongoing conversation and probably an ongoing research opportunity. [00:21:15] Speaker C: There are some research opportunities, and I've talked with Nancy about some of those, about doing some clinical validation of the chomps and things like that. So we do have the chomps as a parent validated, normalized parent report tool for skill. [00:21:36] Speaker A: Yeah. But I mean, from the research perspective, things like the chomps, I mean, I think a lot of other instruments that have come out from that UNC group that you were with, and also the what? [00:21:49] Speaker B: The feeding flock. [00:21:50] Speaker A: The feeding flock. Okay, we'll call it the feeding flock. [00:21:54] Speaker C: That's what it's called. [00:21:55] Speaker B: That's the name of the research group. Richard, it's fine. [00:21:58] Speaker A: It's, you know, speech pathology at unc. [00:22:02] Speaker C: It's nursing. [00:22:03] Speaker A: It's nursing. [00:22:04] Speaker B: Nursing. [00:22:05] Speaker A: Oh, my gosh. [00:22:07] Speaker B: No, they've been significantly significant work in getting tools up there. [00:22:12] Speaker A: There's one. [00:22:13] Speaker C: There's one. There's a couple speech pathologists in the group. And the. [00:22:17] Speaker A: Yeah, you think there would be. [00:22:19] Speaker C: There are, but it was started by. By nurses. [00:22:24] Speaker A: Okay, well, apologies. Fantastic work. [00:22:27] Speaker C: It's cool. Thanks. [00:22:29] Speaker A: But also, like the stuff that Nancy has done, her Feeling Body Investigators program, just to bring those. That is amazing. Absolutely amazing stuff that, you know, I think, to think that you could bring, you know, insight, you know, have a, a five year old develop some insight into how they might be a part of the problem is just incredible. But it just comes down to how you communicate with them, help explain some of these things that could be going on and how, more importantly, how do you impose some change? So I think I'm a big fan of Nancy's. [00:23:13] Speaker B: That's awesome. Yeah. We're hoping to get her on to share her work and her research as well, because it is. It's really applicable to both PFD and our food populations. So on the PFD side, one of the things that I feel like you had such a pivotal piece as the fun uncle of pfd. [00:23:30] Speaker A: Yeah. [00:23:30] Speaker B: Was in really connecting and aligning PFD to being a disability. And I remember that conversation very clearly during the meeting, which was like, you know, is it. Why? Why is that important? And how does that better support families and how does that better support health outcomes? And so tell us a little bit about your thinking and why. [00:23:51] Speaker A: Oh, man. Okay. I remember. I remember that day. Okay. Yeah. I always joke with Praveen that, you know, you guys just keep me around because every now and then I come up with a really smart idea where most of the time I don't. But. But that was one. And I think Shannon Goldwater had just kind of given one of her very emotional talks about why we need this and how we need this. And, you know, the original founders of Feeding Matters, I think of Shannon and Chris Lynn, they're incredible because, you know, they both had children that were very impaired, very affected, but they're able to talk shop with clinicians, whether they're medical or skill based or nursing dietitians, you know, pharma. They're able to talk shop with those people at a very high level and in some ways kind of disconnect from the emotional side that it's also A big part of their lives. [00:24:52] Speaker B: Yeah. [00:24:53] Speaker A: So that's something that I always, like, appreciated and was, like, blown away by, because I think if it's all emotion, you're going to lose all your clinicians, and if it's all, you know, you know, nuts and bolts, you're going to lose, potentially your families. So I think Feeding Matters as a continuation of what Shannon and Chris were doing has been able to kind of walk that line very well, very effectively. But in my mind, I was thinking, she was saying, kids with PFD are not getting the help that they need and this and that. They're not getting these therapies that they need. And then I was thinking, in my mind, I'm going, well, I have kids who are very sick, like, with, for example, Crohn's disease or maybe had an organ transplant. And there's. They don't have specific things at the schools for that, you know. [00:25:46] Speaker C: Yeah. [00:25:47] Speaker A: But if you have a disability, let's say you have hemiplegia, you have, you know, some kind of cognitive or developmental delay, you have a speech language delay. Oh, yeah. There's, like, infinite therapies for you. So therapies are not geared for a disease or a diagnosis. They're geared for a disability. And I think, in my mind, go, that's the answer. It's a disability. It's not a disease. And it's a disability in a very kind of gray kind of way, where some kids can have profound disability, where you might need intestinal tube feeding, you might need a special formula, you might need, you know, a lot of help. Other kids, you know, may not need that much help. But again, we created, like, the most infinitely large umbrella you can create, which is brilliant. [00:26:44] Speaker B: Well, that's what I mean. Like, because that conversation then led to Pamela's conversation about the icf, and that was. I think. I think there's a few key, distinct things about PFD that are very different but also probably contribute to it being very broad, which does garner some criticism. Yeah, I think it's broad intentionally to be able to. And individualized. [00:27:04] Speaker A: Yeah. And again, going back to, like, kids with, like, Crohn's disease, there are no therapies available in the school system for, you know, if you have Crohn's disease, it's, you know, but, you know, there are some allowances that can be made, like, you know, you can have extended bathroom privileges, or you can have this or that. And that's getting more at the disability aspect that might come along with some of these diseases. So thinking of PFD as a disability allows for those children that have a greater need for allowances and services and whatnot at school. And I think that was the answer. Because when you're talking about pfd, a disease, and you're asking for all these things to be provided, you go, but wait a minute. All my other kids that have diseases, a through whatever, are not getting anything either. That doesn't make any sense. So I don't know, thinking about it, or at least a disability perspective of it, I think really is the solution to, you know, getting folks the services that they need. [00:28:13] Speaker B: Yeah, I agree with you. I want to talk a little bit about the patient family centered aspect of the work that happened in the pediatric field. And one of the things that Haley and I were talking about as we prepare for this is you as a practicing physician, are so kind of grounded in patient centeredness. And so how do you ensure families feel comfortable, heard, or partners in this effort? Because that was the other piece of this. Like you said, it's that bridging of the gap between clinicians and parents that Feeding Matters has always been a part of. And I feel like you walk that line really well and are inclusive in that way. [00:28:52] Speaker A: I think it's something you either know or you don't. And it's really as simple as just common sense. I mean, you will see stuff, especially like in anthropology and sociology fields about, you know, working with families with these customs or that stuff. I mean, you can codify this stuff a lot, but it just comes down to common sense. You know, are you able to communicate effectively with somebody in a medical setting and, you know, maybe we can teach you, but if it's not kind of built into you for whatever reason, it's going to be really hard for you to understand it. So, you know, I try to speak in very simple terms. I don't use medical jargon when I'm, you know, speaking with patients. I try to, you know, make sure that they understand, you know, what the diagnosis is. I try to make sure that they understand the different pieces that we might be doing, whether it's a medication or a way of feeding or a formula, you know, the role that each of these things play. And, you know, I don't expect for them to understand it all the first time, but we do write it down. And then every time I see them, we're kind of refining and refining and refining that hopefully by the third or fourth time we see them, that they really understand what is going on, why it is that we're doing this, what are the goals that we're expecting to reach? So I think a lot of it just comes down to common sense communication. I think when you see, you know, when you go and look at literature, you know, who are the physicians that are sued all the time and all that? They're just horrible communicators. Maybe they didn't do anything bad or maybe something unfortunate happened, but because they were horrible communicators, they end up getting sued. And you know, where I've seen people where, you know, terrible things may have happened to their patients, but because they are good communicators, they have a good relationship, they never got sued or something. So I don't know. There's a large element of just common sense. I think the people in the social sciences, anthropology, can probably try to do a lot of research into this and so forth, but I think it just boils down to just common sense and being a good communicator. [00:31:15] Speaker B: Yeah. Like if you have it, it's hard to articulate what it is that you have. [00:31:18] Speaker A: Yeah. And if you don't have it, it's hard to teach it to you. Yeah. Because, I mean, I, I've been. There are some parts of medicine where you can get away with not being a good communicator. I mean, if you are the absolute best neurosurgeon that can get the trickiest brain tumors out of somebody. [00:31:41] Speaker B: Yeah. [00:31:42] Speaker A: Your worth is done in the or, doing like a, you know, in a nine hour operation. [00:31:48] Speaker B: Yeah. [00:31:48] Speaker A: It's not necessarily how well you communicate, you know, with that patient or the family. [00:31:57] Speaker C: Very unpleasant to work with for the or. [00:32:01] Speaker A: And some of those people, you, they can get away with it because their worth is, you know, their technical skill and knowledge. In the operating room, we live in the other world. We live in the world of like messy, functional GI disease, feeding problems, you know, therapy, disability. And if you don't communicate well, you will not survive. Even if you have great ideas, you could be telling everything that they need to hear. But if you're not doing it in a way that they're going to kind of take in that information and build upon it, it's not going to work. [00:32:39] Speaker B: It's foundational to relationship building, which also gets you there too. [00:32:43] Speaker A: Yeah. So I don't know. I. Again, that's probably not what you guys want to hear. That is. [00:32:49] Speaker B: No, there's a hopelessness to that. I think if we try to, you know, if our effort is to try to make things more patient and family centered, there is a bit of a hopelessness to that type of answer. [00:33:02] Speaker A: I mean, there could be, but it's, you know, you try to bring in those people that are good at that, and if, you know, they're the people that are going to have probably the best time there, they're the people that are going to get the most out of interacting with these families. [00:33:17] Speaker B: Yeah. [00:33:17] Speaker A: Because if you're not built in, you know, you don't have that built in, you're not going to enjoy having that conversation with that family. [00:33:24] Speaker B: No. And especially with how complex this area is. Like, this is a field that is incredibly complex and has so much room for misunderstanding and not being able to understand what someone is saying in any different domain, really. Well, then that leads to the research aspect of this. What are you finding in this field that is particularly interesting, that's happening in research or future research and. Or what do you think it should focus on next? [00:33:55] Speaker A: I mean, there's probably two things in thinking about this. One of these things is if we go down, like the medical categories of diseases, what are some differences among these groups of how therapies apply or function or outcomes that can be expected? I think back when I was at Milwaukee working with Alan Silverman, I think we had one of the cardiology fellows work with a subpopulation from the feeding clinic that was a congenital heart disease. And right away, you know, going through all the. All the mental health and behavioral instruments that were given, these people were like an order of magnitude different from everybody else as far as the family stress and so forth that comes along with that congenital heart diagnosis and that pressure. You need to gain so many grams a day by this day, or else you can't have the next surgery. And, you know, it just leads to all kinds of stuff. But I mean, just doing some very simple research kind of show some differences between some of our sub populations. But then the other thing that we're not quite there yet is, you know, what is normal? What is the reference standard? And I know, like, Amy Delaney is working a lot on that. What is the reference standard for normal? Because, you know, one of the things that I got out of this multidisciplinary world, you know, working with speech pathology early on, is, you know, learning that, you know, a lot of their concepts were based on one book that described like a handful of patients. You know, it's not like it was like large population research that takes all kinds of things into account. So I think the reference norm has to be sorted out a little bit more. And once you sort out that reference Norm, a little bit better. It kind of gives you some earlier flags, red flags or markers for, you know, you might need therapy, you might benefit from early intervention of some type or something. [00:35:57] Speaker B: Yeah, it's really. [00:35:59] Speaker A: Yeah. So, I mean, I think those are the two things. You know, I don't think one has to happen before the other. I think they can kind of happen in parallel. But, I mean, there's a lot that the tools that already exist in the world of feeding disorder can, you know, highlight in other medical settings, in pediatrics, you know, the down syndrome population, the transplant population. I think a lot of what we know is in preemies, but, you know what? Premature infants. [00:36:37] Speaker B: That's where most of the research is coming from. I think that's a lot of what your work has shown. Haley, too, is where the research is. [00:36:44] Speaker C: Yeah, there's a lot done in the preterm population, and then later when they show up in feeding clinics. [00:36:51] Speaker A: Yeah, no, and I think in most of those feeding disorder kind of studies that have been done, I think the proportion of premature infants is usually pretty high. So. [00:37:06] Speaker B: Yeah. Significant comorbidities there. Well, as we kind of close out, anything that we missed talking about, because you've been with Feeding Matters for a very long time, you've been integral to the field's advancement and evolution. Anything that you think is important for people to know about? [00:37:32] Speaker A: No, I think we covered a lot. I mean, I think the biggest thing about Feeding Feeding Matters is that it's, you know, at its core, it's a really good idea that has been kind of driven by really good people. So in that way, it's been able to kind of harness a lot of consensus. I think it's brought most of the big players in from all the different fields and do things that each of these individuals would have never done on their own. I mean, to do what? You know, that original consensus meeting for the PFD definition, you know, that could have been done at any time by any of these people, but they just can't. I mean, it's not impossible, but it's just really, really difficult. [00:38:21] Speaker B: It's hard. [00:38:22] Speaker A: And it takes a very committed, you know, party and organization like Feeding Matters who is, like, impartial. We're not necessarily favoring any one thing or another. We just want better information for better outcomes. I think that's been probably the. The strongest aspect of. Of the organization. Probably. I assume we'll continue in this way. I think, you know, there's a lot of consensus to be worked upon, and. [00:38:53] Speaker B: I think we still have so much consensus efforts. [00:38:57] Speaker A: Yeah, but I mean, I think these are things that, you know, I think the first step was, you know, coming up with multidisciplinary or interdisciplinary care. And it's. It's like, great. But, hey, each one of these pillars comes with baggage of their own that doesn't necessarily jive with the others. I mean, individuals who are willing to work with the others, but the field itself may still have a lot of, you know, disagreement, but, you know, really establishing that consensus. I mean, just, you know, the last consensus meeting, we were talking about more the psychology aspect of PFD and arfid. There was way more overlap and consensus than there was difference. [00:39:40] Speaker B: Yeah, yeah. I think that was the most exciting thing coming out of that is we thought in two different places. [00:39:46] Speaker A: No, I think there's way more consensus than the lack thereof because, again, we're all working with similar tools and we're seeing the same things. [00:39:57] Speaker B: Yeah, just not talking to one another. [00:39:58] Speaker A: Exactly. Just not talking to one another. [00:40:00] Speaker B: Researching it separately, too. [00:40:02] Speaker A: And that's where, you know, that's where feeding matters comes in. Getting people to talk to each other and start to kind of disseminate some of these areas of consensus. [00:40:13] Speaker B: Yeah. Bridge building and communication is what it. [00:40:17] Speaker A: Seems like common sense. [00:40:20] Speaker B: Common sense to you, I think. [00:40:22] Speaker A: Yeah. [00:40:27] Speaker C: I was thinking it was just my qualitative hat on, like being in that meeting and just hearing all the. The similar things being said over and over, I was like, yeah, you guys are. You guys are saying the same things. [00:40:40] Speaker A: You guys are arguing about the same thing. [00:40:44] Speaker C: That's great. I'm glad you're agreeing. [00:40:46] Speaker A: We're done. [00:40:50] Speaker C: Consensus. Excellent. Okay, well, I'm going to move on to our signature question then. What do you see as being the biggest challenges for making PFD research more inclusive of family perspectives? And how do you think we'll be able to overcome them? [00:41:10] Speaker A: Oh, man. Again, it's going to be common sense and communication. I don't think there's really much more than that. I think knowing whatever reference norms we have and being able to communicate well with patients, you're going to do very well with the vast middle of any patient population you're going to get. Now, I think you might run into families that have very different, you know, ethnic or religious customs or recent immigrants that might do things that are very different, and you might have a harder time reaching those people. But, you know, I think just with, you know, good communication and attention to, you know, what you're saying, how you're saying it, and verifying that they understand it. You're going to do very well with that very large fraction of our, of our families. I think getting out beyond that, I don't think that's something that, you know, I, as a physician, I'm like, that's not necessarily in my lane. And that's where I'm going to count on, you know, social workers, you know, people who are more into the, the social sciences, anthropologists and so forth to kind of maybe study some of this stuff and figure out, you know, how we can start to make some inroads. But yeah, I mean, I think common sense and good communication takes you a really long way in, in this world for sure. [00:42:43] Speaker C: So do you think our barriers are lack of common sense or lack of good communication? [00:42:48] Speaker A: It's probably lack of good communication. And you know, maybe it's not for any bad reasons. You know, maybe just people are super busy. You know, written materials that are provided at the end of the visit are not the best. Maybe follow up access may not be the best. Maybe primary care is not doing their work in this. [00:43:13] Speaker C: But for research for like family centered research. Do you think the barriers are similar? [00:43:21] Speaker A: What do you mean by family centered research? [00:43:24] Speaker C: For conducting family centered research in feeding. So we're making the research more family centered, like involving the families in the research. [00:43:40] Speaker A: I think that's different. I mean, I think there's probably less barriers to that. [00:43:45] Speaker B: I mean, I think still barrier in that. [00:43:49] Speaker C: Yeah. [00:43:49] Speaker B: I think the same thing that I see happen time and time again in this field is people will be talking about either similar things and calling it something different or talking about different things and calling it the same. And that can be applied to, that's a great point. Disciplines that can be applied to interventions that can be applied to assessments. But I think especially as important as you look at research is like, are we researching the same thing? Are we saying the same thing? And I think that's an overwhelming barrier when you're trying to incorporate families. [00:44:19] Speaker A: Well, I think maybe if we're going to talk along those ways, then maybe having people, you know, starting with the professional colleagues that we have, the primary care providers and clinicians really understand what the definition is for pfd, what the ARFA definition is. Yeah, and, and you know, using those kind of correctly because I think a lot of maybe the challenge is, you know, people calling, like you said, something different, the same and vice versa, starting to fight about stuff they don't need to be fighting about because they're ultimately saying the same thing. [00:44:58] Speaker B: I mean, honestly, like it happens a lot for many different things. But wow. It's so funny because we didn't necessarily have a theme for today with you, but the countless times we talked about communication, I think that's the theme of communication. That's our theme for this. [00:45:16] Speaker A: And common sense. Don't leave out common sense. [00:45:18] Speaker C: Common sense. [00:45:19] Speaker B: We'll name it Communication and Common Sense. [00:45:22] Speaker A: Sounds good. [00:45:24] Speaker B: Richard, thank you so much for joining us. We really, really appreciate it. It's been great spending this time with you and thank you for everything you do for pfd, the families, the children and feeding matters in general. Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free [email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.