[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley. Estrogen feeding does matter.
[00:00:13] Speaker B: Today we've got lessons from the Family Advisory Council and this is an exciting episode because I've known Brandt for a while and I'm so glad to have him on with us today. So I would love to introduce Brandt Perry, who is on our project team for our PFD Research Consortium and is a former Family Advisory Council member of Feeding Matters. So welcome Brandt.
[00:00:38] Speaker A: Thanks, Haley, Jacqueline, appreciate being here and being able to share and get some input here.
But as you mentioned, been part of the fac, the Family Advisory Council for in the past as a chair for Feeding Matters. But I came to be involved with Feeding Matters through a need on my end in 2016. So it's been many years, but originally came as somebody needing the services and using the resources. And then as we kind of developed in our journey, my family, okay, learned a lot of things the hard way and so how do we give back and then got involved in volunteering and ultimately Family Advisory Council and Power of Two program. And so thrilled to be able to be here, be part of the research consortium and part of that. But I thought I might share a little bit about my journey, my family side. So you have a background of that and understanding because the topic we talked today on the episodic care. I've experienced both. So we'll share a little bit of that. But in doing this, I've got three children.
My oldest, no feeding issues, PFD picky either, but no real issues. Middle one, Braden, he is now 10.
At about 2 years of age, we encountered not wanting to eat some things that started out kind of mild but then got to the point, hey, you touched food. Severe allergy reactions on the skin, a lot of issues in that regard, but then to the point where it wouldn't eat. And then we went down this path of failure to thrive and going and along this process try to figure out what was going on. Because we didn't ever have this before with our first child. We know nothing about this. We went to allergists because the skin that's represented, we went to the general practitioner, pediatric doctor, we went to dermatologists and we were working with different groups trying to figure out what was going on and struggling with it. It was a very long process but ended up going to a team approach model and where we got a real dive in wider range of knowledge and focused in on ultimately what we'd get diagnosed with. Brain was EoE, eosinophilic esophagitis which that was a long one to just learn to say, let alone figure out and deal with. So we got the UE diagnosis. We then went down the path of NG tubes. We were real resistant to G tubes, trying to do things that were surgeries. We. We really pushed back, avoided everything we could unless it was necessary, and ultimately got to the G tube spot, which was the best thing, the right thing for him and for us. But we were very painful process and getting there, and we learned a lot along the way.
[00:03:42] Speaker B: Yeah. How old was he when he got his G tube?
[00:03:45] Speaker A: So brain. Yeah. Would have been about two and a half, 24 to 26 months maybe by the time he got the G tube. We started in probably about 18 months of really seeing issues and diving deep into this. So it was months of figuring it out.
[00:04:02] Speaker B: Yeah.
[00:04:03] Speaker C: May I ask what. What do you think the resistance or those feelings of resistance were from? Like, we. We had a very similar path of resistance about the G tube.
[00:04:18] Speaker A: Yeah.
[00:04:19] Speaker C: I'm just wondering, like, for. For you all, what do you think the resistance was from?
[00:04:25] Speaker A: Yeah, a couple things on that. In hindsight, now you can look a little better, I think.
[00:04:29] Speaker C: Right.
[00:04:30] Speaker A: One was, I don't think we wanted to recognize that it was that serious.
If we got to the GT like this was it like this? This was the final step. This. And so we kind of always kind of looked up, oh, well, if we take this, this will take care of. This will take care of. And took it in little steps and I think trying to avoid something saying, oh, it's this serious. The other side of it was, well, I don't have much clinical background. My wife does.
We also were aware of anesthesia, you know, the risk of the G2 surgery procedures, very minimal, but little patients. He's been in multiple procedures. We had scopes. We had a lot of things going on. So we were really trying to minimize the surgical exposure risk, anesthesia risk. And so in an effort to minimize that, we would take that path to. And push that off.
And it was only. Yeah. When we really said this just, this isn't working. The other path. So we finally said, yeah, this is right. And in hindsight, it was the right thing. It made things much easier. It was much better. And even to this day, he doesn't fight medicine doesn't taste good. He has to take a medicine, doesn't bother. He puts in the G tube, he's got an out.
But from that process, we learned a lot of things, like some a little more painfully learned than others. But when my daughter Came along Sydney. Two years later, we were just kind of surfacing out of that with Braden, and we started seeing some similarities. Not exactly the same things, but similarities. So this time we knew a little bit more. We already had a team together that was gastrodermatology, nutrition, who else is in there? Allergy. And so we started looking with that team at what was going on, and we're able to more quickly identify pfd, but F pies the food protein allergies instead of the EOE aspect. So something new to deal with. Figured that out a little sooner. And this time we were also at a point, failure to thrive. Tried all the things that we could do on our end, and we just weren't able to do it. I mean, we just weren't able to get her there. So when we were at that point, we now took a different approach. Okay, G tube. We know what the outcome is. We, we. We kind of sidestepped it and learned a little bit off the last one and went to that. And again, the right step now brain is 100% G tube fed Sydney is about 50%. So we got a little blended approach there. But we did learn from that. And we had a variety of care models that were introduced in this, across the whole platform and then in individual chunks. So we'll share a little bit that what was episodic, what was continuous. But I did want to share a little bit, maybe a little more detail just for the Family Advisory Council, so everyone understands what we're doing there. Because that group is really trying to advise Feeding Matters and the PFD alliance on how to more effectively meet the needs of families negotiating pfd.
And we give feedback on proposed policies, programs, initiatives, contribute to the strategic planning. And the FAC members, they come from a wide variety of experiences. Some have medical background, some don't, but all have care for children, loved ones, someone in their life that has pediatric feeding disorder and so has a very unique input for what that brings. And every one of those is just a little bit different. There are similarities. I'm sure people listen, they say, oh, yeah, we went down this path. We had to test those things. We had to do that. So there's similarities, but everyone's journey is a little different too.
But then let's take a look at our presentation for today, because I know what we wanted to do. We wanted to focus and look at some key takeaways that were out of the 2024 international pediatric feeding Disorder Conference and also from the Shannon Goldwater Educational Forum. And we'll get in and look at really a couple key learning objectives of our episodic care. Continuous care.
[00:08:54] Speaker B: Thanks, Brandt. It was important for us to hear about the conference and the Shannon Goldwater Education Forum from your perspective because while there's professionals that come to that conference, as probably the majority of the attendees, you know, we really believe that it's that how families are working together with professionals in terms of that co learning that's happening within that conference. And so we thought you'd be the perfect representation to use that lived experience and share a little bit of the key takeaways, not only that you had from yourself and your own journey, but also as a representation of the fac.
[00:09:32] Speaker A: Yeah, yeah. Really key points you make there. And very important as we get into our learning objectives, three topics we want to look at doing. We want to understand the episodic care.
Because there was a point in time, I know for me I was, I don't know what this is. I had to go learn how to read, ask questions and understand. So maybe there's people out there the same. So we'll try to share a little of that. We understand the educational variations that providers receive during school, how they're trained, because there's like all of us, we all have different knowledge bases. We know some things and not others. And that's true of our healthcare providers too, and the teams that we have supporting us.
And then we want to look and identify the efforts that all of these healthcare providers are doing to maintain their education on pfd. And there's some really good takeaways and we really saw this at the conference. So we'll dive in and look a little bit of this. So the episodic care now these definitions going to share here that this comes from some of the presentations, some of the talks, the things that were put out there on the conference. And so it's that professional view. I'll add a couple of my thoughts on it. On the side note, because it's the layman's view, the parent view, maybe not clinical view.
[00:10:51] Speaker B: Yeah. Give us both views. What's like professional view of episodic care and then your view as a parent.
[00:10:56] Speaker C: Yeah.
[00:10:56] Speaker A: So some of the professionals either the real definition is that episodic care, this is, it's gained attention in recent years. There's always a discussion, I think ongoing of episodic care versus continuous care. But it was really pioneered. They started looking studies back about 2009 and it's continued to develop over some time. And there's, you know, definition of this episodic care of it's bursts or episodes of treatment to achieve a meaningful participation based goal in a defined period of time.
And now this contrast, right, against continuous care, which is involves ongoing management support over an extended period of time. It's kind of broad definitions of this.
And we know when this started they started looking at this back like I said, 2009 and there was a look of outcomes, what was effective for both cost aspect, what were they paying, what was doing in large Medicare, Medicaid, big government payer and what were outcomes versus the payment side. So there is a little bit of discussion in the background of what's driving that. Is it a pay, is it results?
It's a valid discussion and question, not one we're really tackling here. But just know that's part of this. How the care is delivered, how healthcare providers are paid for. It is all part of this discussion. And I think that we as parents need to be aware of that. So we engage those discussions, right, and are aware of how those healthcare providers have to work within the system too because this is their job, this is their livelihood too, right. So we've got to fit into that.
But then the episodic care too is, you know, balancing the benefits of targeted treatment and costs, the effectiveness of episodic care with comprehensive monitoring and holistic approach of continuous care. I think that's the essential improving the outcomes. And we'll look and see that both models have advantages and disadvantages and ultimately is going to come back to us as family caregivers, the patients to work with the healthcare providers and determine what's the best approach, what really meets the needs for that child across their continuum of care. And it may change. I know we've seen this, right? We saw that Brayden, for example, when we were going down this path, we saw things, an allergy response, he touched an avocado head to toe in outbreak. And so we were looking at this with allergy and the GP and that was very much an episodic care. We looked at what was happening here, we were looking at the treatment, resolve it, get him back to where he was in doing this. And we had a defined period of time, we had benefit, we addressed the symptoms and we took care of that, which is great. It was a great outcome for episodic care.
But then what it also blended to was the eoe, the larger picture that we got into, well that's more the continuum care. It's not something we're doing in one snapshot. It's not a defined End beginning a period of time is ultimately going to be over his lifetime. So it's a little bigger than what I think the intent of the defined aspect of episodic care is. So when we look at implementing the G tube continuous care, but as we looked at food trials and dealing with eczema outbreaks that were related to the eoe, but we had to deal with those as episodic models and working through that individual aspect and getting the outcome in that defined period of time, which worked great for those things.
So saw a little bit of both in our household and the same was true of Sydney where we saw the failure to thrive.
It was a really addressed initiative as episodic care. We've got to get food in. Here's how we're going to do this. We're going to do it, we're going to measure, we're going to gain weight.
Here's the 30 days we're doing this. We saw great results, tremendous in 30 days, added almost 20% of her body weight. I mean it was big impact. But then we had to look at, now there's the f pies aspect of it and it's not a defined, it's the long term one as well. And it's this continuous care model. So both of those were blended and I suspect that many people dealing with PFD are going to have a similar experience. Some things are going to fit better into each care model. And that's where we really come back onto us saying, okay, our healthcare providers are presenting this, this is how I want to go about doing it. We know the expertise on our child, children, how does that fit? Is that the right approach for them? And we're very fortunate in that the providers, we work with, a collaborative effort, they listen back to what we're saying and I think that's very important too to finding that team that's listening. It's a two way street of understanding what's working for the family in implementation and not just what is there on paper as hey, this is the standard of care, we want to do it this way. So I think that's something to be a key takeaway in understanding the definition of episodic care. It's great, but understanding too, we've got to have a joint discussion and it's everybody looking at it together, what's right in this case for the pfd. But we did want to look and share a little bit too on some of the advantages and disadvantages of the care models. The episodic care advantages, certainly striking I mean, the flexibility of working with the family schedule is huge every time it takes a lot with different appointments, different specialties. So that flexibility is good and it's a little more tailored to the child's needs.
With this care and skill, you know, practicing in the natural environment, we may be doing things at home, not just in a hospital, in a patient room, where our kids tend to respond a little bit better to that. Less of the white coat syndrome and a little more relaxed.
And there is some look at it, it's cost effective and that's referenced that a little before that. That's kind of initially what drove some of these things on the episodic care model, cost effective aspect where the payment is for everything altogether. But it does have disadvantages, right? It's a big commitment from the kid. It's sometimes more intensive over this defined time period. So they've really got to be engaged.
And you know, at a seven year old level, I know we saw some challenges with that. Getting them to stay engaged, to go every week for a month and be engaged in giving feedback in allergy testing was not something our kids wanted to do at that age. So it's a challenge, but it also, you know, can result in the fragmented care long term. We saw that as we were looking at some of the different providers, right. We had these episodic cares with a GP and one with an allergy and one with the dermatologist. But at the end of the day we dealt with individual issues, but it was fragmented and we didn't have that whole approach. And that sort of drove us to shift to a team care model so we could get benefits of episodic care, continuous care, but sharing that knowledge across them all.
And then, you know, it's focused on the treatment over preventative care.
And that's like we saw this with eczema on one on Sydney, that really, really bad scenario, found the right medicines, topical creams that could address it, took care of the symptoms. The underlying issue was still the food protein allergies didn't address anything of that. So we have to take a look at that separately. But the episodic care helped for what was going on on her skin at that episode.
Well, then we have the continuous care model, right? And so it's comprehensive, it's looking at the whole picture and that's a plus.
And it coordinates, yeah, maybe a little better between providers for transition, different levels of care, but I think we can get that too. If you have a team approach and they're all working together, ours are in the same facility. When we go, we meet with everybody, they're all together. And so I feel like even if we're doing episodic care, we get the benefit of that coordination between the providers by the team approach and then the holistic approach.
And I do think that's important because even when we deal with our individual topics, our allergies, our flare ups, something, we got to be looking at the whole picture for our kids. And when we're not looking at the whole picture of it, we see things reoccur. The flare ups may come back and back. We address it at the time, but we didn't address the underlying issue. So that holistic approach, I know we see a difference when we're looking at it that way with our providers, but then there's challenges to it, right?
It's time, resources from family care providers longer term, and it's a heavy dependence on the providers and a healthcare facility.
But sometimes that may be a right thing too. So we look at that in cost, typically higher cost, you know, especially on PFD, newer diagnosis, we're on G tubes, 100% fed.
Things aren't just covered. There's some always challenges in getting coverages and formulas and this. So cost is a huge component of this. I know for us, probably for a lot of people dealing with it. And it's part of our health care system, so we've got to navigate it.
[00:20:56] Speaker B: Oh, sure.
[00:20:57] Speaker C: Would you say that continuous care fits more within having a medical home?
[00:21:05] Speaker A: What do you mean by medical home?
[00:21:08] Speaker C: Well, a medical home is where a child or any patient would receive their care from. You know, having a primary care provider that's linked within a medical facility or like I think you would have a.
[00:21:29] Speaker B: Network or a coach of like navigating, like lots of different.
Because you're talking to like so many different specialists and different opportunities. But a medical home is someone who is really always up to speed and knowing that like their referral may go out, but they want to know what happens after that. And I think so often we're finding that a lot of our families don't have that medical home, that they may get a referral, sit on a waitlist for a really long time, but no one's worried that they're sitting on a waitlist.
[00:22:02] Speaker C: Someone that will follow up and link back and do the work to coordinate for you.
[00:22:10] Speaker B: I remember a lot of the discussion during that conversation around continuous care versus episodic care and a lot of the AHAs that people and especially families had from some of that Discussion was as it relates to feeding therapy or even I think like sometimes like speech therapy or other sort of more rehabilitative like therapies is there's the we go every week sort of model and we like keep going and keep going and keep going and sometimes it's not working. And so I think some of the AHAs from that conversation was like the episodic care of these like spurts of like marathons versus sprints and doing a sprint may help improve in some instances. And I remember that being a big aha from a lot of families. I didn't know if you had any.
Anything that you took away from that in that conversation during the summit.
[00:23:06] Speaker A: Resonated much. I mean we just.
I haven't had that type of challenge and that type of.
[00:23:12] Speaker B: Yeah.
[00:23:13] Speaker A: Position for.
[00:23:13] Speaker C: So it might also be more possible for people to get funding to go for an intensive burst than to have, you know, just a lot of continuous appointments. I don't know.
I mean, do you think people might have an easier time to get an intensive like eight weeks funded than to have a year of outpatient visits?
I know they might get more bang for their buck.
[00:23:48] Speaker A: Well, that's a good point. The bang for the buck or at least some bang for the buck with the insurance aspect.
I know that we've seen a couple others. We've talked to the same type of thing in regards to the feeding therapy.
When we're looking at these, it's so many. It's a block, right? It's okay, you have a defined amount. So it's that episodic care model. It's a defined amount. You do this, you go through the steps, you get the referral and then you can get that type of care and treatment and then hopefully the result out of that. So that's, you know, like when we're going to go that route, that's the direction we have to go because that's how we can get that bang for the buck. Because that's what that model is and it's set up to do. And I presume we haven't done that feeding therapy yet, but presume that's the results model. Right. That's a result driven model and that's why they structure it that way every week and you're going and going to see results.
[00:24:49] Speaker C: Then there's a good body of evidence behind it.
[00:24:55] Speaker A: That's the expertise you bring into it. I feel like sometimes I just bring frustration from.
Yeah, so I do think that's part of it is, you know, working within the systems that are there. How do you get the bang for the buck in, you know, what the healthcare providers can do, what the insurances can do, the payment, the cost and the cost.
Yeah, yeah. I know a number of people that were trying to get in and do feeding therapies over the summer because, oh, you don't have school, you don't have to pull them out of school, you don't have to. It's not as much to try and coordinate and catch up on if you can do it then. But a lot of people have that. So it's tough then to get in because the clinics are full.
[00:25:38] Speaker B: Yeah, I just, I was curious on the feeding therapy side because I remember that being a big aha from some people that were coming out of it. And I think we're just not used to the language behind episodic versus continuous and how those appear differently in care.
And using that as a framework to think about care as well is really helpful.
[00:25:59] Speaker A: Yeah, and that's a good point. The language. Because you say that and I know from my side parents side it wasn't language that I knew, but I knew.
[00:26:09] Speaker C: To me as well. I mean prior to conference and everything. Brandt. I mean I was not familiar with this either.
[00:26:17] Speaker A: So that's good to know. That gives me. Yeah. But I'll tell you what I have noticed in learning this and being able to talk about it, but also other aspects that as parents, if I can at least know and have a rough understanding of the terminology and approaches the healthcare providers are using, our communication is better. They understand better what I'm trying to drive at and I understand better what they're trying to drive at.
And it's maybe that industry jargon and looking and constantly learning that. But I think that may be a big takeaway here. As parents, caregivers we can have is even if you don't know all the details of them. And it may shift on us understanding what episodic care is like our first point in this objective here and what continuous care is.
Just knowing that knowledge and being able to work that into discussions with providers helps. This is huge benefit. You're both speaking the same language.
[00:27:22] Speaker B: Yeah, language does really matter now. This has been interesting, Brant, and kind of like how you think about it in your takeaways because it is. It's just a new language. And Haley, I didn't know as much either as we entered into the episodic care conversation. So that that was really helpful.
And I know a lot of other things that were talked about during the conference was around like provider education. And I feel like that had a lot of AHAs for both professionals and families too. Do you want to tell us more about that, Brandt?
[00:27:51] Speaker A: Yeah, and I think this is a key thing that I think I don't necessarily, didn't necessarily look at it this way coming in, you know, the provider education, our healthcare providers think a lot of time as a, the parent, the patient. Look at me, okay, they're my electric provider.
They got it all, they know it all, they're experts on everything there, whatever. I got a question on and I'm very knowledgeable in this, but, you know, there's a lot to know out there too. So, you know, as the families we seek these providers with the expectation they're complete knowledge, total skills, everything. But, you know, the training, it's going to vary a little bit where they, what they were exposed to, where school PFD is a pretty new topic and still a lot of places that the training part of the schooling may not be that in depth. So it may be really experts on a number of other items. But a pfd, that's still fairly new.
The. There's numerous diagnosis, right. That could be applicable. It's a very complex issue. So RDI, expert on EoE, that's why we're tied in there. Some of the other things maybe not. It's not the focus.
So I think understanding that and that the world, the medical knowledge is always changing. You know, new things come up, things that we thought before, maybe we don't think anymore because new evidence is out there. And I think understanding that, yeah, healthcare providers may not know all of it there, but they have that education, they are the experts there and we know what's happening. Working with our kids, families, they're the other leg on that stool of, okay, there's the knowledge, the medical expertise. But I think as families, we gotta come and understand that there's a limitation too. Don't expect one person to have all the answers because it just doesn't happen that often in the real world. But the team approach, I think, really bolsters that because you have the knowledge set very deep on some of these matters and you stack all of them together. Now you have this wide range of knowledge that gets very deep and you have experts on gastro and the feeding and nutrition and therapy, and that really, really does make a difference.
And I think if we learn that and we acknowledge it and can work with the healthcare providers in that way as families, it lessens frustrations that can be there because the expectations are different. And it can lead to that. Here we talk about an open discussion on the approach to care and the goals and that open discussion, okay, maybe you don't know and maybe going to do some research for us and come back that that's huge and sets, you know, for us. It has the right expectations and okay, we make progress though in doing that and it gives us more options and care as we explore those.
But it is, it has been eye opening to see there is such a wide variety of education and you know, how complex, you know, with the PFD now being this diagnosis code, there's so much goes on behind it.
You know, like even in our case, two PFDs, one EOE and one F PIs and they couldn't be more different.
[00:31:26] Speaker C: Yeah.
[00:31:28] Speaker A: So it's challenging in that, but in that education, what the conference really showed us was this continuing education part.
And for me this was eye opening one, but really just warming to see because the conference, it brought all these healthcare providers together that are coming there, taking their time to learn, to continue build their knowledge and expertise to help our kids. And I know talking with some of them that it's their own personal time, sometimes their own cost of funding themselves, sometimes they're making personal sacrifices to be there to learn, to do it because they care and they're passionate about what they do. And that from parent side is just so great to see that all these providers are out there trying to help our kids do this. And I, I think as families we go to the doctor's office, we know they're busy, you have to schedule appointments, we know they're busy doing this, but don't necessarily see all that effort that they're putting in behind the scenes and the continuation education credits and even all the effort, you got to do certain things, you have to meet objectives, you have to do paperwork. Just getting recognition of those credits is a project in itself, it seems. So they really put in a lot and then that keeps them knowledgeable on all the new advancements. I mean, we looked at lots of studies, lots of research that was done and presented at the conference, ranging from NICU up through adolescence, a wide range of patients, that was all presented there. So everybody in there now has so much more knowledge that came out of that conference that they're going to go back and help all these other people. And that was just huge. It was thrilling to see.
But I think families, yeah, we don't, don't necessarily see that, but knowing that they're doing that, it's one that, hey, lean on the providers too, that they're going to have that latest information and they're building their knowledge and continuing to grow and develop. I know we probably all do it in our personal lives in other areas, but for parents that aren't in health care, this isn't our area and I don't have time to go learn this and do it and keep up with research and reading. So it's great having providers that do this and know.
[00:34:03] Speaker B: Yeah. That do have an interest in our continuously learning. Has it changed, kind of knowing that about a lot of providers and especially your providers. Has it changed how you've interacted with them? Kind of knowing both sides of it and kind of seeing how they interact in a conference setting too, of like really trying to consume the research and grow in their practice.
[00:34:24] Speaker A: Yeah. Yes. In two regards. One, because now I kind of engage not from a point of, hey, are you still learning things? But hey, are you. Have you been in any interesting conferences outside things? Outside of when we're sitting in this little room? Because what I found is people that are passionate about things, whether it's learning a PFD or whatever you're into, they like talking about it. They found something interesting like talking. They're excited and energized about it. So being able to talk about that opens that up. I tend to learn some things because they like to share it back. But then it also is helping the relationship side of. Of the. Where how we're working with the healthcare providers because can be very transactional, right?
[00:35:08] Speaker B: Yeah, we're in, we're doing clinic.
[00:35:10] Speaker A: They're very busy, we're very busy. We're going through, we're getting things done, we're doing the test, we need to and move out versus what else are they doing? Are they doing that? And now seeing the side of how. How much time and effort they put in there, I also say, hey, are, are you getting any time, you getting out and able to do any vacations, you getting anything good and sometimes family, different things. And so we've got to know that side of it too. And you know, they're brief conversations because we still have a lot. Everybody's busy, but it just opens that up a little bit more from the relationship side and less transactional.
[00:35:44] Speaker B: So yeah, that's where that collaboration comes in. Because even though it's a personal conversation, when you get over to the treatment side and the medical side of it, it can help in that regard too. That's really interesting, Brandt.
[00:35:59] Speaker A: Yeah, but Haley, you're kind of on the other side of that, what other people you're working with, that maybe you're on the other side, not healthcare professionals asking those kind of questions or that kind of conversation.
How do you see it? Is it a plus? Is it distracting? I've never asked the healthcare provider the medical side of it. Really.
[00:36:21] Speaker C: Asking.
[00:36:23] Speaker B: Do you think patients are okay to like, what's your perspective on how patients come into the room and ask questions?
[00:36:29] Speaker A: Because you have the more clinical view of this than I do.
[00:36:33] Speaker C: Oh, no, it's always fun to, to chat like that. Yeah.
[00:36:40] Speaker A: Okay. Yeah, no, it's good. Make sure I'm not distracting too.
[00:36:44] Speaker B: No, I don't think you are. I think it's, I think it's good. I think you're building the relationship in the right way.
[00:36:49] Speaker C: No, it's good to have a rapport like that.
And it also helps you get to know the, the patient more and, and to be able to chat about things about their life. And you always. Yeah. To establish that kind of conversational thing and you'll get to learn other things and it helps you to check up on them later and you know, be able to ask other questions.
[00:37:15] Speaker A: Yeah, it's great to hear that feedback too and make sure that. But yeah, it was a great takeaway and lesson learned from the conference and you know, for any of the families listening, I would say if you haven't had that opportunity to join, see and do it, take, take a year, one of them. It's just, you know, two day window essentially that you can do virtually most times. But it is, it is eye opening and you learn a lot. But a better understanding too of the whole picture of that care side, which absolutely encourage it. So 2025.
[00:37:50] Speaker B: Yeah, 2025 in February. I'm glad that you found a lot to take away from it, Brandt, because I think we're always worried about, you know, having so many different disciplines and families come to a conference. You want to make sure everybody's finding value in the depth of knowledge presented or the type of knowledge presented or the evidence base that's presented.
I'm really glad to hear that you still found value out of it and you felt like it was a connection point that was worth doing for your time because your time is really valuable in taking care of your kids and doing this on top of that.
[00:38:28] Speaker A: Yeah, it was well worthwhile and would absolutely encourage everyone we talked to have partaken it, see and learn, understand. But in the interest of everybody's valuable time. Yeah, let's take a look.
Conclusions. Right.
So as we talked Here what we really wanted to drive some key takeaways and answering our initial questions right, we had question one. The objective was understanding episodic care. And so this is the healthcare provider, caregiver and patient. They must decide if episodic care is appropriate on a given situation. And does this model of looking at a specific item, specific timeframe, looking at results, is that the right model for this one? And it's a discussion.
The second objective that we wanted to get was understanding educational variation providers receive during school and the amount of the training a healthcare provider receives on the pfd. The related matters, you can have a wide variety and they open conversation on the resources and a multidisciplinary team can, can really expand and build that knowledge and give you a greater range of resources.
And then the third objective we want to do is identify providers efforts to maintain education on pfd.
And as we were just talking the International Pediatric Feeding Disorder Conference, I found that to be just huge evidence of that care, the passion, the drive that our providers have and continuing their knowledge and providing great care for all of our PFD kids.
And I hope that these three items can help give some understanding and at least look at what may be the right course of care for your family, your kids, that direction and open up that conversation. And now maybe you do it on the same language with the healthcare providers too because you can say, oh, episodic care, why don't we look at this model? They may open their eyes and go, oh, okay, but I appreciate the time being able to talk.
Any closing remarks or questions?
[00:40:50] Speaker B: We do have one question for you, Brandt.
You know the project team, we've spent a lot of time trying to prepare the consortium as they look to set kind of the tone for research. And you've done a great job in helping them facilitate their own governance and some of that. But as we try to get further into what's needed in the research, what is something that you think is a barrier to family centered research in this field and do you have any solutions or ideas for that?
[00:41:23] Speaker A: Yeah, it's a very broad question.
[00:41:27] Speaker B: You can take it whatever direction you like.
[00:41:30] Speaker A: I don't know.
[00:41:30] Speaker B: Have you been asked to participate in surveys and stuff before?
[00:41:36] Speaker A: Yeah, I've been on some survey end of it. But I think maybe from the research side, the biggest barrier I've seen doing in this is when you're looking at PFD research, where do you go with it? Because it is so broad and there's so many facets to it that I think really creates a challenge because like if we're looking at the research side, gotta have a specific target, a goal in this and you've got to arrange funding and it's gotta have some results to it. Right. Whatever those results may be. But when you have something so wide.
Yeah. I think it's very challenging to break that up and identify how you're gonna do it. And I think that may be where more effort, more. I don't want to say research because that's what we're trying to do. But where the effort may be is trying to. How do you maybe segment a little bit more. And I bring that because we've done some studies and things with eoe. There's a lab here tied to one of the hospitals. But it's very focused. It's EOE specific and it's. We're looking at, you know, doing a scope, doing a biopsy from there. You have specific results, see who it is.
I feel like PFD is just that broad thing. How do you narrow it in? And I don't know that there's a good answer for that. I apologize. I'm not bringing the answer. I know you said no.
[00:43:01] Speaker B: I think it's a really great barrier that is. Yeah. I really do. I think you're bringing forward a good challenge as we try to navigate what does it look like for us to advance that family centered research. Because it is. It's a very broad name for collection of things and that manifest in different domains.
[00:43:20] Speaker C: Yeah.
[00:43:21] Speaker A: And maybe that's some of it is the research of PFD and helping to build the awareness is going. Right. The term is out there, the medical code is out there. But maybe that's part of that research of what it entirely encompasses.
[00:43:36] Speaker C: It's very big.
[00:43:37] Speaker A: Yeah. And I know there's educational efforts going on that and into the schools and driving that direction. So no doubt the future education of PFD will be much stronger even as we go forward because of all these efforts. But yeah, I would say that's my key challenge. Just the broad scope of this thing.
[00:43:57] Speaker C: Do you think one of the things that may help will be making a prioritization of research projects?
[00:44:09] Speaker A: Can. But okay. And I kind of feel like I'm a chicken in today we're going to serve.
Okay. Well that. Yes. What's the research?
What research? We got to get that dependent fun how we find. How do we identify and do that to drive that.
But it can and it should.
[00:44:31] Speaker B: Right.
[00:44:31] Speaker A: That's typically how it's going to get driven. We got to research, it backs it, it drives things that direction to implement the change in new models.
But I suppose we had those answers plug in somewhere a little different on the research side and help there as well.
[00:44:48] Speaker B: But no, I think we'll find. Well, I don't think everybody has the answers. I think that's what this project is about is trying to find those answers, trying to bring more awareness to the research side of it, trying to have research be more family centered. So I think it's a great answer, Brandt, I really do. And your time here is so appreciated and we're just so grateful to you for all that you do for Feeding Matters but also on the project team and yeah, it's been great today.
[00:45:16] Speaker C: So thank you for asking all the good questions.
[00:45:19] Speaker A: You are well and I think that's where it starts, right? We're asking the questions, the discussions are there, there's information coming out in conferences and that's where it starts. And it just continues to get better from here and more knowledge, more people aware.
[00:45:32] Speaker B: We're not going to move a mountain overnight. We just got to slow, slowly chip away at it.
[00:45:36] Speaker A: That's it. That's it. No, I appreciate being able to be involved in this and share my experience at part in it and be thanks.
[00:45:44] Speaker C: For chipping with us.
When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of two Parent to Parent mentoring program. Parents in need of support are matched with one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with pediatric feeding disorder or PFD as well as avoidant restrictive food intake disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information please contact us at 623-242-5234, extension 306 or
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