Episode Transcript
[00:00:01] Speaker A: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic multi domain view of PFD improves diagnosis and and treatment outcomes, that identify actionable steps that will propel the field of PFD forward and that answer the question what does success look like during the Shannon Goldwater Summit for Change? All of these amazing on demand offerings and more are available for viewing beginning March 1 through April 30. We have great on demand pricing for families, students and healthcare professionals, including a healthcare professional's group rate. Visit feedingmatters.org conference to view the on demand agenda, see available CEUs and register today.
[00:01:07] Speaker B: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter welcome to Feeding Does Matter. I'm Jacqueline Peterson with my co host Dr. Haley Estrom and we've got an exciting show for everybody today because we are with Kyler Romeo, Feeding Matters Director of strategic initiatives and Dr. William Sharp, who is the Chair of the Feeding Matters Research Initiatives Task Force. Hi everybody.
[00:01:40] Speaker C: Hi. Good morning.
[00:01:41] Speaker D: Hey, Good morning.
[00:01:43] Speaker B: Now we meet weekly to be able to really dive into what do we need to do as a field for feeding and what do we need to figure out from a research perspective. But what I'm currently the most proud of of this group is our work in the PFD and ARFID overlap and navigating that overlap. And so we're here to just talk about now that the ARFID and PFD consensus paper, at least the first edition, has come out with our summary of PFD ARFID consensus statements. We thought it would be good to touch on these 10 consensus statements and where we think the field might go from here. So I mean, since it's been published, what's and everyone's kind of thinking on it or what's everybody heard from the field about the consensus statements and then we'll get into it a little bit more.
[00:02:33] Speaker E: Well, I'd be curious, has Feeding Matters gotten any reaction to it from a from a community standpoint?
[00:02:41] Speaker B: Yeah, I think that's been really cool to witness. We've heard kind of both publicly and privately how helpful the work has been and how people have been watching this work from afar take place and then it's exciting for it to finally be published. I even saw one person who was really excited for the Feeding Developmental Window graphic to come out publicly since we had presented that at the conference. And I feel like one of the biggest pieces coming out of this work is that that Feeding Developmental window is longer than people realize, and that that is why it's so important to pay attention to pediatric feeding disorder and the system of the four and how they affect and interact and everything else. And so I think people were really excited about that.
The other thing that we've heard a lot, and this is more on the family side, is I think there's the general confusion between ARFID and pfd. And I think if you're a family that finds yourself in one diagnosis or another, you're almost kind of blind to the other side of it. But then there's this other piece that, like, once you start realizing it, it's even more confusing because you're just like, do I need another diagnosis? What is the helpful point of that diagnosis? And so we've been navigating a lot of conversations around that. I think more often it's families that may have received an ARFID diagnosis trying to better understand the PFD side and why maybe they still need or would have had a PFD diagnosis. So that's kind of what we've experienced on our end. I don't know, Kyler, if you have any other.
[00:04:20] Speaker C: I've been sharing it with other strategic partners that I have connections into, like academia and the national organizations, and then just purely at a local level, because, as you all know, I also work in the hospital system. I'm currently in the nicu, but I also float up to peace and pic, and that is where we see children enter the system through our emergency room and then have to go through the differential diagnosis process. And what I've been hearing is that this paper really provides everyone a broad overview and it's brought forward education needs.
So now we're getting more requests to dive in, deeper into PFD and arfid. And what does that mean from a local level? We've shared this, like, with our resident team, and we have actually, we have a work group that's formed because of these types of publication and the identification of holes in our own processes. So I think what's really encouraging is that it's led to deeper conversations, those about, like, what are we actually doing now? And are we really looking at if it's pfd, if it's arfid, if it's both to help kids that are in this system currently. And it's also highlighted the need for education when we're looking at other organizations that, you know, have some weight and system change, like our national organizations for speech therapy and occupational therapy and medicine. So I find that really encouraging that this publication can touch people at so many different levels.
[00:05:59] Speaker D: Yeah. One of the family members in our consortium had told us that when this publication came out that they heard from their provider that immediately they had an emergency meeting and all the providers, they had called a session for education to just look at the publication and try to learn what they could from it, like an emergency journal meeting.
[00:06:29] Speaker B: So I thought that was a very cool story of a way to implement.
[00:06:34] Speaker D: Yeah. So just an immediate educational meeting.
Yeah. So there's just a lot to be learned.
[00:06:44] Speaker B: Yeah. And I think there's still so much work to do, too.
[00:06:48] Speaker E: Yeah. I was going to say the reason I asked that is I'm much. The impact we'll see in the literature or the academic literature will take much longer because, you know, the publications have yet to come. And I do know there are. There is at least one publication that. Jacqueline, you and I did a commentary on that specifically. Highly references this paper as influential to their proposing. It's basically proposing modifications to the ARFID diagnosis. And I think that this paper directly influenced that work. So that was good to see.
[00:07:16] Speaker B: Yeah. The ripple effect will take a little bit longer, for sure. I mean, that makes a lot of sense.
Are you seeing anything institution wide because you're in an institution, which is different because we hear from so many community providers and other institutions.
[00:07:31] Speaker E: I still think these kids are confusing regardless of the paper. Like, I think what happens is I think both PFD and ARFID are under recognized. I think they're mislabeled. And I think there's a lot of educational work to be done to help that get solved for we at Children's Healthcare of Atlanta are going to be creating an ARFID subspecialist who can go to the hospital and really help navigate the diagnosis of ARFID versus, you know, a pure PFD case. So that's something we're working on as a system. But that shows you even with a system with a large feeding program. Yeah. There's needs for resources more, more broadly.
[00:08:10] Speaker B: Yeah. Really. Back to both of your points about highlighting education.
All right, well, let's pivot to maybe reading the consensus statements and hearing everybody's responses on them, because this was a foundational group to put those consensus statements together as A review. This, this group of members in PFD and ARFID authorship and communities and different disciplines met in August of 2023 and we facilitated a consensus meeting. And then after that consensus meeting, Will and Haley put together more lead authors on really establishing these 10 consensus statements, checking it with the group to make sure it was what we talked about in the meeting. I think that's always a pivotal shift as you get into the writing after a consensus meeting and then publishing this. So I'll maybe I'll just run through them and get everyone's response. How do we feel about that?
Okay, so ARFID is the only feeding and eating disorder that explicitly mentions feeding in the section of disorders in the DSM 5. But the manual should provide guidance about what distinguishes a feeding disorder from an eating disorder.
I think that's. I, I mean I know I was going to read all 10, but I just have comments on each. I guess that's been one of the biggest AHAs for me and Will. It's so funny because I think you. That was one of the first things you said to us was like, it's a feeding and an eating disorder. And I like didn't get it at the time of why that was so pivotal. But it is pivotal because I think so traditionally we're used to hearing about ARFID as only an eating disorder and that leaves out a major component of like the link between these two conditions.
[00:09:43] Speaker E: Well, and I think that's where the confusion comes about is because you can be a young child and have ARFID and, and you're going to get into the other statements. But the, the, the whole purpose of ARFID was to have a lifespan approach. And the DSM specifically mentions it most often occurs during. Emerges during infancy, which is, which is not what the eating disorder side of the equation is thinking about. They're not thinking about infants.
Arfid. Right. And Jacqueline, you and I have talked a little bit about. They also needs to be a little bit more concern consistency in the DSM itself about describing what ARFID is because it's very inconsistent as a text.
[00:10:24] Speaker B: And that leads to. There is clear diagnostic overlap between PFD and arfid, but both definitions would benefit from further clarity regarding how to navigate this overlap.
Hopefully this work is a start of that. The relationship between PFD and ARFID is such that they can influence one another. Criteria can be met for both conditions or they can exist in isolation. The panel discussed four different scenarios outlining this relationship and that would be PFD in isolation, PFD that transitions into arfid, ARFID that transitions into PFD and ARFID in isolation.
Any thoughts on that from all of you? Because I know that that was a big one too, in terms of how we kind of came to that conclusion.
[00:11:02] Speaker C: This is my favorite graphic and way of explaining it from the publication because I think this is where it's so confusing for so many people, of where do I fall in? And depending on where I am, what should I be expecting as far as assessment and management? Especially for families to have this big picture view, understanding like the transition and the overlap and then what to ask for when their kids are in care? I mean, families really should be approaching their providers and asking these questions of how do you know it's not pfd? How do you know it's not arfid? Is this both? How would it look differently to you if my child was on the other side of the coin to see if they're being matched with the right team?
[00:11:50] Speaker B: Yeah.
And that is why a fourth statement is a multidisciplinary lens is beneficial for evaluating and treating both PFT and arfid. However, the involvement in relative contribution of disciplines differs by treatment. So setting. I think for us, one of the biggest AHAs was people were saying, saying the same thing but having different meanings to them. So like a medical assessment, you know, I, I think on the PFD side, we kept pushing like medical assessment, medical assessment, medical assessment or rule out or whatever. And that looks very different from an eating disorder perspective. Any thoughts in that regard?
[00:12:28] Speaker E: Well, I think with, from my understanding of the eating disorders side of the equation is they're often looking at the medical teams getting involved because the eating restriction has caused medical issues. So the child restricts and then you have to figure out like, what is the medical implication of that restriction as opposed to on the PFD side, you're really looking at the medical issues causing a disruptive relationship with food. So it's a different lens than how you're involving the medical team.
[00:12:58] Speaker B: Yeah, I think that's well said.
[00:12:59] Speaker C: It was also so helpful just to have the perspective of both sides, because if a child is being sent to feeding skill domain with a diagnosis of either PFD or arfid, we in feeding skill are thinking of medical as primary. Right. Like first we must rule out medical complications before we even work into our domain. We know that if medical is not managed, that child does not feel well, we cannot make progress in the other areas. So this is really Helpful to me. So if a child came with an ARFA diagnosis, I should not assume that we've been through all of the medical rule outs as I would expect, perhaps if I were seeing them in the hospital system or if they were coming with a different diagnosis. So this is really helpful from that perspective to know how to advocate for ruling out medical.
[00:13:57] Speaker D: Good point.
[00:13:58] Speaker B: Yeah. And that, I mean that leads to the fifth one too, which is determining the best diagnostic fit. Medical screening and feeding skill assessment should be part of assessment protocols for both PFT and ARFID providers. Both ARFID and PFT providers is exactly how it's read.
And I think that's true because I think that is points back to that lack of education or the educational gaps that we need to start building up is how to even do that, that type of medical screening and feeding, even feeding skills screening.
Any thoughts, Kyler, from a feeding skill assessment perspective? I know we had a lot of discussion there and you met with the feeding skill providers on the paper a lot.
[00:14:37] Speaker C: Well, it kind of brings me back to the first point that we had talking about like it being arfid, being with an eating disorder and feeding disorder and you know, from the feeding skills side, we look at feeding as a contingent relationship. It's built on reciprocity and requires us to look at both the caregiver or the feeder as well as the child because those, they're intricately linked and they're dependent on each other if you're talking about a young child. So for feeding skill we, we feel that feeding skill, well, feeding skill we know, is influencing children across, you know, a longer time frame perhaps than one would think. It's not just until they're three years old, continues beyond that because it's not only like your functional oral motor skills, but it's also the role of cognition and food preparation and food selection and mealtime hygiene. So there's just so many different components that have to be considered for a much longer period of time than one would think, which keeps me in that category of feeding and the dyad and looking at screening and assessment and management. Management needs to include both active parties, which is the child and the caregiver.
So that was something that kept coming to the surface when we were talking to other feeding skill providers. And that domain is the importance of the range of skill, the duration of time and how it's influenced by so many different factors.
And those need that needs to be considered across PFD as well as arpid. Yeah.
[00:16:21] Speaker B: And losing it because you can work on something at 2 years old, but need something different at 4 years old. And so kind of acknowledgement of that timeline and growth and development was really important, which is really right into it. Number six, the feeding development period, birth year, infancy and toddler period, early and middle childhood needs to be considered when determining diagnosis in planning treatment for both ARFID and pfd.
And then the seventh one is PFD that transitions into ARFID likely involves a different ideological pathway than ARFID in isolation. Age of onset, learning history with food and eating disorder course, among other developmental and learning histories are important considerations in diagnosis. Both pathways involve a negative association with food. Any comments on this one? I feel like this will be one that there's a lot more future researcher looking at.
[00:17:10] Speaker E: Yeah, I, I think that emphasis on the negative association with food is, is critical.
You know, when you look in the dsm, the other eating disorders, anorexia, bulimia, they still enjoy eating. They're just restricting and per purging in some cases. But food is, it's still something that is valued. Right? With arfid, it involves a negative association with food where food is not viewed as something. It's viewed as something to avoid and restrict. And so that's such a unique hedonic shift away from it being pleasurable to being something that is unpleasant. Which makes sense from a PFD standpoint, from all the medical conditions that can cause ARFID if they're prolonged and, or they consistently pair eating with pain and discomfort.
[00:18:02] Speaker B: Yeah, kind of a recognition and acknowledgement of that. And back to why, you know, we started with ARFID is the only feeding and eating disorder. And that's how we're linking it to PFD. 2.
Age of Onset is an important consideration. Both ARFID and unresolved PFD may be present in adulthood, but only ARFID may emerge in adulthood.
Age was a really interesting conversation, I would say within the group just because of the feeding skill acknowledgement that refinement of feeding skills is longer than of period than we realize and you know, Kim Arfago really young and all of those things. Anybody want to share anything around age and the thinking around that?
[00:18:42] Speaker E: I was going to look toward Kyler or Haley to talk about the idea of PFD in adulthood. You know, these, these individuals who grow up who don't have the, they're never going to have a fully well rounded skill set for eating and, or they might have neuromuscular conditions that, that lead to them to still have PFD but it's not arfid.
[00:19:02] Speaker C: Right, Right.
I kind of am thinking of PFD and adulthood is like falling into two category categories. One would be the person that does have like an underlying medical condition or developmental conditions such as a person with cerebral palsy, where they will continue to have additional, you know, they will continue to have challenges in the oral motor area that can impact their safety of eating and swallowing, their efficiency and their funct. However, that does not mean that they do not love food or that they cannot participate entirely in mealtimes in a way that is fulfilling and pleasurable for them. So that to me looks like PFD that's continuing across the lifespan. But I would not call it arfid. They don't have a negative association with food. You know, they don't have one of those three subtypes. So that would be PFD that continues into adulthood. The other scenario is if somebody has a traumatic injury perhaps in adulthood that causes a loss of feeding skill, function or the ability to safely eat and swallow. Now that can be categorized under the primary diagnosis. Perhaps that's a person that's had a traumatic brain injury and so now they are no longer able to eat and swallow. I kind of want to bring that one forward of how would you classify that person? If this was acquired out of the 0 to 18 window and it's an adulthood, would we keep that underneath the comorbidity?
[00:20:42] Speaker E: I don't think we resolved that. Like, I don't even know if we can.
[00:20:45] Speaker B: I don't think it is resolved. I think that was one of the clear. Like, because it would. Because a lot of people went in like, well, could PFD and ARFID kind of merge together almost and be something of the same thing? And that's where I think it was really clear that while there is a lot of overlap, there are these identities that exist within both diagnoses that are outside of the other. And I feel like. And then as PFD transitions into adulthood, that is another one that there is, there is not a space for what does an adult feeding disorder look, look like and look for?
And so I think it is. It's a yet to be determined.
[00:21:20] Speaker C: And our parent consortium have they shared insight on how they would like to be identified or viewed as an adult that continues to have.
Who continues to fulfill the diagnostic criteria for pfd?
[00:21:36] Speaker D: It's unresolved right now. I know that in practice what's happening is they either receive the diagnosis of ARFID or something else, but also if providers try to give them, if they're over 18, if they try to give them the diagnosis of PFD, it just doesn't work.
[00:22:04] Speaker B: Yeah, it bounces back because it's pediatric diagnosis. Yeah.
[00:22:08] Speaker C: You know, the importance though of diagnosis is just lifelong because I'm back to thinking about the person that has cerebral palsy. And as they age, then their needs change, their skills change, and often they need to go back to see a feeding specialist to help with compensation techniques so that they can still be fully participatory at meal times. So that the diagnostic label is still quite critical in them being able to access services.
[00:22:38] Speaker B: Yeah, I mean, that's, I think something really clear coming out of this work. And there's a few things I think where hopefully not only us as a system change organization, but others in the field can take it up and really get some thought leadership out there, do some research and get us further along in these efforts. Because I think even like, what's a diagnosis mean to all of you? I think that was really one of the things that was interesting in, in coming into this is both our diagnoses, both could work in certain scenarios and be the same as the other.
But what, what does it. What. Why is a diagnosis important? I think is a critical piece of this work.
Anybody have thoughts on that?
[00:23:22] Speaker E: So in my training we were told that diagnosis have three or four, five purposes in general.
One is it's a way to match treatment. So having a good accurate diagnosis gets you aligned with the treatment that you should be getting.
It's to help clarify and focus research. So if you can't study something that is not well defined, and so if something's ambiguous, then it's hard to study it. It's also used by insurance companies. So when you go to Bill, you're submitting a charge and that charge needs to be for a recognized condition. Those are the three I can think of. There probably is a fourth or a fifth, but those are the big ones.
[00:24:12] Speaker C: I think you produce quite like that. It's a lovely list and it's easy to follow how one affects the other. We were taught in school you're always trying to get to the. To the why. And that's what the diagnosis is to me. You know, why are these symptoms presenting in the manner that they're presenting? And you have to keep digging and rolling out and digging and rolling out until you get down to the why. The one other component that was highlighted for my profession is that I. Diagnosis can also create community.
So this is a way of Bringing people together for other actions, for advocacy, for education. You've already mentioned, you know, for research. Well, but that's one other extension of how diagnoses can be used to describe people. Not to limit people, but to describe them so that they are, like, empowered to, to participate in the way that.
[00:25:09] Speaker D: They would like to and for the family point of view, so they can, you know, like for parents, especially with, with feeding, so they can explain what's going on to others.
You know, it. It's so hard when, when your child's not eating to be able to explain to your extended family and your friends to say, like, no, they're not. It's not just picky eating. Like, no, mom, you can't just put, like, the food they, like, at the front of the spoon and the food they don't like under it. Like, it's not that simple, you know, or. Or that's such a good point.
[00:25:47] Speaker C: Yeah. Yeah. And it's not something that you've done or that person has done.
[00:25:51] Speaker B: No. Yeah. No. Some validation there too.
[00:25:56] Speaker D: Yeah. It's not my.
[00:25:57] Speaker B: With public acceptance. And that is what will continue and hopefully continues with this work of linking these two together close. So on the ninth one, the proposed phenotypes of arfid, sensory sensitivity, fear of aversive consequences, lack of interest in eating or food, apply throughout the lifespan. However, the presentation of symptoms may vary by age and developmental status.
Any comments on those?
I think as hopefully the world of PFD starts working closer with the world of arfid, both can become more comfortable with the work that's being done in either field. And I think that's something on the ARFID side and that it seems like the ARFA community has really gotten behind in the, in the literature. And so it'll be interesting to see how that evolves as we link the worlds together.
[00:26:45] Speaker E: You know, one of the things, those three, the fear, the sensory, and the kind of the ambivalence toward food, those are in the DSM text as, like, reasons why it might occur, but they're not part of the diagnostic framework as currently presented. So I never really even thought about those. As a pediatric person. I was like, this is great. I got my, I got my manifestations. You're underweight, you're dependent on something. You've got. You've got malnutrition or you having significant psychosocial dysfunction, which, which are the ARFID diagnostic criteria. The eating disorders community really honed in on those, those ideological drivers. The fear, the sensory, or the ambivalence And I think that just shows you kind of how we've talked before about how that community is much more poised to accelerate research than the pediatric side.
[00:27:37] Speaker B: Yeah. The research infrastructure and sophistication is very different than the feeding disorder world, for sure.
And that is why our 10th statement, and hopefully the one that sits with the future of this field, is because of the overlap and influential nature between PFD and arfid, it is vital that both fields partner to refine and share terminology, identify common outcome measures, and continue to pursue open communication to inform future research options. I think that it was kind of like our big aha out of the consensus, while there were other consensus statements that came out of it. It was like, let's work together.
And in that vein, where do you think this work goes as people are working together in these two fields?
[00:28:19] Speaker C: Well, we've been talking about the need to create this common language or a shared language so that the work that is being done in the PFG side, the work that is being done in ARFID and beyond in other areas, development, advocacy, that that work will feed each other, but we need to use common language so that we can hone in on what is working for who, and so we've brought that forward as a primary need.
[00:28:49] Speaker E: Well, we also know that Feeding Matters is continuing to organize this work. And so we have the second consensus project ongoing, which is looking at the commonalities of treatment.
From what I've seen from the work from that group is there's general agreement that once you have a diagnosis of arfid, whether you're on the pediatric side or the adult side, the focus of treatment is very similar in terms of you're trying to create greater flexibility with eating and greater comfort with eating through exposure. Now, what that exposure looks like is going to vary highly. And I think that's what's exciting about the next consensus paper, is we're going to be outlining exactly what the difference is in terms of that exposure work by age and developmental status.
[00:29:34] Speaker B: Yeah. And that work was really looking at, like, okay, if everybody's publishing in this world and we say these kids are very similar, you know, but we're publishing in different silos. Can both groups of researchers start looking at this together and trying to build whatever that, like, framework for common terminology is, or, you know, are the treatments as similar as we think? And it was very interesting in being in the consensus meeting, seeing that, like, you may be in the ARFID world and you may be in the PFD world, But you kind of use similar things with just a different aim to them. And so I think that work is also like a first step of forward progress. And that's why I think with Haley and I's consortium, well, it's not even ours. It's theirs now, but they will, I think, continue the work from us, too, of saying, you know, where. Where does this field need to go? Because they are a perfect example of why it is really challenging that there are two labels for things. And I think they. I mean, you tell me if I'm wrong, Hayley, but I feel like they see the reasons to see both and they. Because they're kind of familiar with both based on how they were shared both diagnoses. They've done their own thinking from it, from their perspective as either individuals with that label or family members that have received one or both diagnoses for their children.
[00:30:59] Speaker D: Yeah. And it's also really interesting to see, see as. As they've gone through the. The trainings, how some of them have been like, oh, I think my. My child actually has both, or my child actually has this one maybe first, and then they. And then they develop this one. Or like. Like a lot of the. The family members hadn't heard about one or the other, and it. It's just more a matter of, like, which provider they saw.
[00:31:30] Speaker C: You're really kind of highlighting that we don't have that clear pathway to care. We already know that there's challenges even with being able to correctly diagnose kids. So, you know, bringing PFD and ARFID together I think is essential, like how we're bringing it together in the research, and the consensus is essential for it to translate to practice.
If we really want practice change as quickly as we're demanding consensus actions, then we have to be tackling it together.
[00:32:01] Speaker B: Yeah. And I think understanding that there's PFD that transitions into ARFID and really like, refining that and being able to not just think of it as, like, one's pure this or one's pure that allows you to either prevent it from becoming ARFID or not just think of it as only ARFID if we haven't thought about the other domains. And so I do think that there's greater value in linking together and collaborating in that sense.
Really excited to see what are what the consortium will continue in these conversations, because as we start building bridges to this work between the consortium and letting them lead a lot of the research, and especially as they publish their research agenda, it'll be interesting to see how this work kind of has its place in that research agenda as well. So a lot of efforts that need to happen, but hopefully this is like a good foundational step for us to build on and really important work for the field. So thank you all for joining me in this conversation. Any final closing thoughts and what you hope this work looks like in 10 years? What do you think it looks like in 10 years? 15, 20?
[00:33:09] Speaker D: I hope to see some revisions.
[00:33:11] Speaker B: Yeah, spot on.
[00:33:14] Speaker E: That's exactly where my. My brain went to.
Particularly as we've advocated, they need to reference each other and describe their relationship with each other in the diagnosis themselves.
[00:33:27] Speaker B: Yeah.
[00:33:28] Speaker C: That leads to infrastructure changes and how we're able to treat them.
[00:33:33] Speaker B: I agree, Kyler. I think for me, well, it was really hard to get to this level of understanding. It's like we had a waitlist problem, we had a pipeline of problem, and now it's just like, maybe we can expand and get more people involved in helping support these individuals, children and families. So, really proud of this work that we're doing as a team and I really appreciate being on this task force with the three of you. And thanks for spending the morning with me. Bye, everyone.
[00:33:59] Speaker D: Thank you.
[00:34:00] Speaker C: Thank you.
