Caring for Our Kids: Children's Colorado Is Meeting the Needs of Medically Complex Patients

00:00:00:05 - 00:00:28:06
Tom Haederle
Every parent wants their child to be healthy. But that is not always the case. Some kids are considered to have medical complexity, multiple conditions that require a lot of health care. Meeting the needs of those kids and their families can be challenging, especially when trying to coordinate care between several providers and specialists.

00:00:28:08 - 00:00:47:28
Tom Haederle
Welcome to another episode of Caring for Our Kids, a limited podcast series from Advancing Health. I'm Tom Haederle with AHA communications. Today you'll hear how Children's Hospital Colorado has designed team-based, coordinated care to make care seamless for medically complex kids and their families.

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Children playing

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Children talking

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Children talking

00:00:54:07 - 00:01:17:10
Julia Resnick
Having a child is an act of optimism. We go into parenthood with the highest expectations. We imagine them running, jumping. And above all else, we hope that our kids will be born healthy so that they can fulfill all the dreams we have for them. But that dream is not the reality for many families that have children with special medical needs.

00:01:17:12 - 00:01:44:12
Julia Resnick
19% of kids living in the United States, more than 14 million children total, have health care needs that require specialized care. That is where pediatric hospitals come in. The U.S. has over 200 pediatric hospitals that are dedicated to advancing the health of the nation's 73-million children. Welcome to Caring for Our kids. I'm Julia Resnick, director of strategic initiatives at the American Hospital Association.

00:01:44:14 - 00:02:11:25
Julia Resnick
In today's episode, we're focusing on caring for children with medical complexity. About 1% of kids are considered to have medical complexity, which means they have multiple severe chronic health conditions resulting in significant health service needs, functional limitations and high health care use. Caregivers of kids with medical complexity often struggle with the fragmentation of their children's medical services. Children's Colorado is aiming to change that.

00:02:11:28 - 00:02:39:19
Julia Resnick
They are dedicated to making care seamless and coordinated for medically complex kids and their families through their multidisciplinary clinic located at the Anschutz Medical Campus in Aurora, Colorado. To learn more, I spoke with two leaders from Children's Colorado. Suzy Jaeger is the chief patient experience and access officer. She was joined by Dr. Glenn Furuta, a pediatric gastroenterologist who serves as the section head of pediatric gastroenterology and hepatology.

00:02:39:21 - 00:02:41:07
Julia Resnick
Here's Suzy.

00:02:41:10 - 00:03:05:05
Suzy Jaeger
We opened our multidisciplinary clinic back in 2015, and this was after we had conducted an exhaustive search around the country, working with other children's hospitals and adult hospitals and trying to figure out what is the best way to care for highly complex patients in a multidisciplinary setting, especially patients who travel a long distance to visit with us and then go back to their own communities.

00:03:05:05 - 00:03:26:11
Suzy Jaeger
How can we provide that array of services in a way that's convenient for families? That we are able to provide them with timely access to care, and certainly the latest cutting edge type of care that's based upon evidence-based research. So, we settled on the model that we have in place today. It's about a 24,000 square foot clinic facility.

00:03:26:13 - 00:03:50:00
Suzy Jaeger
It includes 26 exam rooms and ten consult rooms. It also includes two large provider teamwork areas, where there are more than 20 workstations in each of those areas, so accommodates a large number of staff. We also have two observation and evaluation rooms. We provide a really nice family lounge to families. They're here for a long time. When they're here for a visit, and it's usually a full day, if not more.

00:03:50:07 - 00:04:14:02
Suzy Jaeger
And so we provide some space for them to get away from the clinical setting and relax and be with their families. They also can use that space to interact with other families who are there for similar reasons. And then of course because we're a children's hospital, we have to include play areas. So there's three really nice play areas for kids to be able to utilize, not just our patients, but the siblings that often times will travel with patients for this type of care.

00:04:14:04 - 00:04:33:08
Suzy Jaeger
So we really designed this space around trying to provide an optimal way to coordinate care for children that have complex needs. We have 78 different multidisciplinary clinics that currently meet in that space, and in 2023, we provided care to more than 12,500 patients and their families.

00:04:33:10 - 00:04:35:07
Julia Resnick
Here's Dr. Faruta

00:04:35:10 - 00:05:15:27
Glenn Furuta, M.D.
2006 I imagined in Boston that we really needed to do better, and how can we take better care of our patients who have a group of diseases called eosinophilic GI diseases? And those patients suffer from not only intestinal inflammation  with allergic problems, but food allergies, and they have feeding problems and nutritional problems. If you can imagine someone would need to come in and out to different offices over a number of different visits, 8 to 10 visits, and then have probably more importantly, all of those providers communicate to establish a centralized plan to help take care of that,

00:05:15:27 - 00:05:45:16
Glenn Furuta, M.D.
that's challenging. And so when I met with Suzy and others here at the hospital, I was like, this is what I would like to do. And they're like, well, guess what? We're doing that right now. And we have been able to care for patients from 40 states, from four different countries now who come here to receive that kind of care where we can really have an immediate discussion to share the expertise in providing the best care that we can.

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Jill Tappert
Do you want to try to say that again more clearly, or do you want me to repeat after you?

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Abigail Tappert
After me.

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Jill Tappert
Yeah. You sure?

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Abigail Tappert
I sure.

00:05:52:27 - 00:06:05:29
Julia Resnick
This is Abigail Tappert and her mom, Jill. Abigail is now 20 years old with complex medical needs. She's a patient at the multidisciplinary clinic at Children's Colorado. Here's Jill, Abigail's mom.

00:06:06:01 - 00:06:21:17
Jill Tappert
Abigail's voice sometimes is harder to understand than others. She wants me to repeat what she said. So Abigail said that she is humorous, courageous, adventurous, and mischievous.

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Abigail Tappert
I like to do Pokémon Go walks and drives with Geneva and Mom.

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Jill Tappert
I like to do Pokémon Go walks and drives with Geneva and Mom.

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Abigail Tappert
I wish everybody had a chance to go to Children’s.

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Jill Tappert
I wish everybody had a chance to go to Children's. We are family of four from Boulder. So we're fortunate to be able to have just a one hour drive to receive care at Children's Colorado. We've known since Abigail was very young, certainly before grade school, that she didn't seem the same as her peers with autism. There was another layer, but we didn't have the words, we didn't have the vocabulary.

00:07:07:03 - 00:07:27:01
Jill Tappert
And then when she was a young teen, her medical status deteriorated. And at the time, we didn't know why. And there were a lot of things happening all at one time. In the beginning of that time period, we had trouble getting the care she needed. No one knew what was going on. No one could see the big picture except me, and I didn't necessarily have all the words in the vocabulary.

00:07:27:03 - 00:07:46:27
Jill Tappert
And then Abigail got into the special care clinic here at Children's, and I do not think it's exaggerating to say it was literally life saving. Got a pediatrician at a very high level who was looking at me with all of this - at all the symptoms that were crossing a whole bunch of different disciplines and needed to be looked at together.

00:07:46:29 - 00:08:09:17
Jill Tappert
And then she got all of those different specialties, all those different doctors literally in one room. I'll tell you from the patient care perspective, it made all the difference. One of the things that was happening was dysphasia or difficulty swallowing, and that got Abigail to see Dr. Furuta and the diagnosed with eosinophilic esophagitis. It's quite a mouthful, EOE.

00:08:09:19 - 00:08:33:17
Jill Tappert
And then ultimately to be seen in the GEDP multidisciplinary clinic. After her EOE was in remission, she still had a number of symptoms throughout the day, all day. The dysphagia, the difficulty swallowing. And by bringing in those other specialties, the allergist recommended just a regular plain old over-the-counter allergy medication when those symptoms were spiking in the spring and fall.

00:08:33:19 - 00:08:58:05
Jill Tappert
Those additional eyes looking at it from a different perspective - that made a significant difference. Along the same lines, having access to a nutritionist and feeding specialist have also made a big difference, both in safety and in her overall nutrition. That pediatrician at the top of that, at the top of the triangle with me trying to see the big picture connecting dots as she always was, was well, have you looked at this yet?

00:08:58:07 - 00:09:25:25
Jill Tappert
No, we hadn't. And we pursued a new possibility. And it turned out Abby does have something called POTS: positional orthostatic tachycardia syndrome, which in her case is relatively simple to treat. And when we figured that out and started treating that, Abigail's migraines went away. And that had not been simple to treat. And there's no way we would have figured that out without someone who was doing that team approach,

00:09:25:27 - 00:09:32:06
Jill Tappert
looking at all of the things across the different specialties and troubleshooting right beside me.

00:09:32:09 - 00:09:58:01
Julia Resnick
All kids deserve the best care, and Children's Colorado has made the investment in designing a system that can meet the needs of even the most medically complex children. By co-locating specialists and building a culture of team-based care, they're improving outcomes and the patient experience for the children and families they serve. Since Doctor Furuta and Suzy have been there from the start, they shed light onto what it takes to get a clinic like this off the ground.

00:09:58:04 - 00:10:24:11
Glenn Furuta, M.D.
Every other month, someone comes from somewhere else to visit us to see what we do and how we do it. Before they come, I always tell them, make sure you've had a conversation with your institution because what you're going to see it's...it's really fantastic, but it's going to require some infrastructure and dedication. One of the things that I thought about when we were starting this was you need to have institutional commitment and you need to have leadership.

00:10:24:13 - 00:10:57:15
Glenn Furuta, M.D.
And those two things together really will help make this happen. It's just kind of dreamlike, to be honest, because it's exactly what I've always thought about wanting to do, to make sure that we could serve patients in a way that they had the expertise present and available, that the providers themselves were able to feel fulfilled in what they're doing in a way they had not been able to do before, that we're able to have that immediate impact but then also create some really innovative research studies that can be impactful afterwards also.

00:10:57:15 - 00:11:08:22
Glenn Furuta, M.D.
So it's not just the four walls of Children's. We want to spread care outside of here, too, in a way that's going to be impactful other places. It's yeah, exactly what I had always wanted to do.

00:11:08:24 - 00:11:31:09
Suzy Jaeger
If you think about this from a patient family perspective, it's so much better. The outcomes are so much better. The costs are reduced. The amount of time that they have to spend in the hospital is reduced. It provides the primary care physician who's going to be responsible for this child once they return home with the comprehensive plan, detailed information about the results of the consult and the next steps and so forth.

00:11:31:09 - 00:11:53:03
Suzy Jaeger
So, I mean, it's the kind of program that may not make the most sense financially, but from the perspective of patient family experience, it clearly is the right approach to take. And it also requires, you know, a big commitment, 24,000 square feet. We wish we had more space. We're lucky we have 24,000. We're making, good use of every inch of that space.

00:11:53:03 - 00:12:16:00
Suzy Jaeger
But that's a big commitment of space within our facility to, dedicate to this type of care. But we think it's the right thing to do, and we continue to hear from patients and families and their providers out in the community how much they appreciate and value the service, so that's our guiding light. And, that is what will keep us committed to continuing to provide these types of services well into the future.

00:12:16:02 - 00:12:41:29
Julia Resnick
Thank you to Suzy Jaeger and Dr. Glenn Furuta for your efforts to provide the highest quality team-based care for medically complex kids. And to Abigail and Jill Tappert, so appreciate you sharing your family's story with us. AHA's growing library of resources on child and adolescent health can be found at aha.org/mch.

00:12:42:01 - 00:12:50:13
Tom Haederle
Thanks for listening to Advancing Health. Please subscribe and rate us five stars on Apple Podcasts, Spotify, or wherever you get your podcasts.