From Pediatric to Adult Care: Making the Transition Work

00:00:00:01 - 00:00:22:04
Tom Haederle
Welcome to Advancing Health. Transitioning from pediatric to adult health care is a major milestone. For young people with complex medical needs, it can also be a major care delivery challenge. Hear how one Midwest hospital is rethinking that transition and helping young patients and their families navigate a new phase of care.

00:00:22:06 - 00:00:43:01
Julia Resnick
Welcome to this episode of Advancing Health. I'm your host, Julia Resnik, senior director in the Division of Health Outcomes and Care Transformation at the American Hospital Association. Today, I'm talking with Dr. Tori Barr, section chief of pediatrics at Gillette Children's. We're here to talk about caring for children with medical complexity, particularly when they move from being children to when they're being adults.

00:00:43:02 - 00:00:47:03
Julia Resnick
So, Tori, I'm just so thrilled to be here having this conversation with you today.

00:00:47:05 - 00:00:49:09
Tori Bahr, M.D.
I'm excited to be here, too, Julia.

00:00:49:11 - 00:00:59:02
Julia Resnick
So to start, can you talk a little bit about the children and young adults that are served by Gillette Children's Complex Care Program and the range of medical needs that they might have?

00:00:59:04 - 00:01:30:18
Tori Bahr, M.D.
Well, I am so fortunate to work for the best patients on planet Earth. We take care of patients with medical complexity, and to us, medical complexity is pretty vague. And that's intentional because we know that a single diagnosis in and of itself could be made more complex or less complex by the different identities that a patient and their family has, by the different resources that they have,

00:01:30:20 - 00:02:05:18
Tori Bahr, M.D.
and as a result, we take care of patients with a broad range of needs. The unifying pieces of their diagnosis are that it's some sort of neurodevelopmental disorder. Many of them have technologies such as trachs, G tubes, but that is not inclusive. We actually serve about 1300 patients in our complex care program. And then we also have offshoots of our complex care program, which includes our down syndrome program, our RET program, and our ketogenic diet program.

00:02:05:20 - 00:02:13:15
Julia Resnick
And I know that your hospital is based in St. Paul. So do most of your patients come from the Minneapolis St. Paul area, or do you branch out into the northern Midwest?

00:02:13:17 - 00:02:32:01
Tori Bahr, M.D.
Yeah. So the joys of living in Minnesota is that there's a heavily concentrated group in the metro, but we then serve the greater state of Minnesota as well as North Dakota, South Dakota, Wisconsin, the UP of Michigan and Iowa, and even beyond that as well.

00:02:32:03 - 00:02:35:18
Julia Resnick
Fantastic. And that is quite, quite a geography to cover.

00:02:35:20 - 00:03:08:03
Tori Bahr, M.D.
Yes. I mean, the silver lining of Covid was that we now have virtual care capabilities and telemedicine options. So we are able to serve patients in a much, more thoughtful, patient-centered way. So our team is licensed in all of the states surrounding Minnesota so that we can serve patients and to really maximize, when they do make that ten hour trek from North Dakota down to the Twin Cities, that we really can maximize it as much as possible.

00:03:08:05 - 00:03:31:06
Julia Resnick
Yeah, you certainly want to make that worth their while, especially for these kids with complex medical needs. But what I really want to talk about today is transitioning from being kids with medical complex medical needs to adults with complex medical needs. Because we know that that takes so much more than just finding a new adult doctor. So what makes that transition particularly challenging for your patients and their families and their care teams?

00:03:31:06 - 00:03:33:04
Julia Resnick
What's that process like?

00:03:33:06 - 00:04:02:16
Tori Bahr, M.D.
Well, thanks, Julia. I'm so excited to be able to talk to you about this. This is like my great joy and what gives me the most passion for getting up in the morning every day. My interest in transition from pediatric to adult care actually started long before I was a doctor, and when I was a personal care attendant for a young woman with muscular dystrophy. And when she was in her late 20s, her sister got diagnosed with breast cancer in her early 30s.

00:04:02:16 - 00:04:36:12
Tori Bahr, M.D.
And quickly it became clear that, well, how do you monitor for breast cancer in someone with medical complexity as they get older? So this is kind of where the challenge begins. My client still was seeing her pediatrician even though she was 28 years old. Pediatricians aren't trained in mammography and breast cancer screening guidelines. So part of this process is finding patients great medical homes that can really fulfill their whole care needs.

00:04:36:17 - 00:05:04:15
Tori Bahr, M.D.
It's finding a doctor, but it's also finding a system that is able to accommodate differences. So being creative about how might you do breast cancer screening if you're in a wheelchair? Or have additional medical comorbidities that might make typical screening more challenging? So yes, the care and finding the right medical home, the right doctors is a challenge.

00:05:04:16 - 00:05:33:05
Tori Bahr, M.D.
Even finding adult doctors that have heard of some of the conditions that previously were fatal during childhood. But now people are living, thriving and surviving into adulthood. And then there are all the other challenges that come along with growing up and becoming an adult that are not absent from someone who has a childhood onset disability. Figuring out if you want to go to college, what is that going to look like?

00:05:33:05 - 00:06:02:10
Tori Bahr, M.D.
What are the added needs that you'll need to figure out along the way? And lastly, I have a lot of families who their journey through having a child with childhood onset complexity has been challenging, and there's a lot of trauma, maybe stemming from the NICU, maybe stemming from a traumatic accident, maybe stemming from a diagnostic odyssey that took far too long to figure out what was going on.

00:06:02:16 - 00:06:47:08
Tori Bahr, M.D.
We're still happening. We still don't know exactly what's happening. And the saying goodbye to providers that have walked alongside of you for years along this journey can open up all of this emotional trauma that no one had time or the energy or the resources to be able to address. So it can also just be a moment in time where people really have to reflect on how hard this journey has been, and to go back to fighting again, which so many of our patients at Gillette will say, I finally found the place that feels like home, where they get me.

00:06:47:10 - 00:06:53:04
Tori Bahr, M.D.
And then when we talk about, okay, what about an adult hospital - that gets opened up again.

00:06:53:06 - 00:07:15:13
Julia Resnick
Yeah, that's certainly a tricky transition moment, as all transitions really are. And I think they're just like a few threads, one being that, you know, you need the adult providers to understand those conditions that used to be just in childhood, but also the systems that can wrap around the patient and their families as they are growing and as they're adults, that can really meet those needs.

00:07:15:15 - 00:07:44:11
Tori Bahr, M.D.
Yeah. I think one of the interesting things is that when you think about a children's hospital or pediatric focused, it is designed to be able to care for an infant. It's designed to be able to be cared for a teenager and a toddler all in the same day. And so the people that work in the system are constantly changing their language to be more friendly to an infant than they would talk to a teenager.

00:07:44:13 - 00:08:06:23
Tori Bahr, M.D.
And in the adult medicine world, we assume that all adults can understand things and at a similar level, which isn't true. We know that from the very differences of people, but it's just built into the fabric of working in a pediatric hospital. And that's fundamentally different in adulthood.

00:08:07:01 - 00:08:16:10
Julia Resnick
Absolutely. So at Gillette, how are you approaching that transition process? I assume that it is more than just a single handoff. Like, what does that look like?

00:08:16:12 - 00:08:45:22
Tori Bahr, M.D.
Oh, goodness. So this is our work. I work with an incredible team of multidisciplinary group across the organization to think about how we can do transition better. We follow the guidelines set forth by Got Transition, as well as the recommendations of the AAP, ACP and AAFP to start transition conversations early. Really, I think transition starts from the moment you are born, right?

00:08:46:00 - 00:09:15:15
Tori Bahr, M.D.
Everything that we're learning is to help us be able to navigate the world that we're living in, be able to speak up for ourselves in whatever way that is, and to be able to identify those things that bring us joy and value. From that means, you know, every therapy goal is thinking about transition, thinking about the future as it relates to clearly thinking about the transfer of care from pediatric care to adulthood.

00:09:15:17 - 00:09:43:23
Tori Bahr, M.D.
At Gillette, we try to start this conversation around 12 to 14 years old. And really from the beginning stages, it's just talking about the future. What do you want for the future? What is that going to look like? Have you thought about those normal transitions that all families and young people go through as they get a little bit older and building it into the fabric. You know, switching from elementary school into middle school is a transition

00:09:43:23 - 00:10:13:21
Tori Bahr, M.D.
and this is how we can start having the conversation so that it doesn't seem so scary of talking about, well, one day you're going to have to go to the adult hospital. We can talk little bite sized steps along the way. We have implemented in some of our clinics, including the Complex Care clinic, Transition Readiness Assessment, which is a survey that patients take before their visit once a year just to reflect on what are those skills, how are we feeling about that transition to adulthood?

00:10:14:03 - 00:10:44:16
Tori Bahr, M.D.
Really the purpose of that is to have a conversation. Transition should never be, "It's been a great 18 years. I won't see you anymore. I'm referring you to the adult hospital." It should be thoughtful. It should be patient-focused, and it should really be bite sized chunks along the way. I also readily accept and desire anyone that is felt to be high risk for transition to adulthood

00:10:44:16 - 00:11:09:15
Tori Bahr, M.D.
to come to my clinic, I have a wonderful another med-peds partner Dr. Lattner, and I that see a lot of these patients and the rest of our complex care team. We'll work through that transition. We often start off with thinking about who is your care team right now. And I think it's really important for patients to be able to visualize what this care looks like.

00:11:09:17 - 00:11:33:10
Tori Bahr, M.D.
So I actually create a table that is a grid that starts with who are all of your specialties? Who's your current doctor or provider? And what is the plan for transitioning into adulthood? So for some providers, they'll get to see forever. For other providers, they might have a specific age cutoff. In our system and in the pediatrics world

00:11:33:10 - 00:11:56:18
Tori Bahr, M.D.
in Minnesota, it is different for every single specialty. So that might be 18, 21, 26, 35. There's a lot of random numbers out there, but I find by being able to write it out for patients and families, all of a sudden this idea of, I have 17 specialists and I need to transfer all of them...becomes a little bit more bite sized.

00:11:56:22 - 00:12:24:00
Tori Bahr, M.D.
Okay, there's these three that we need to figure out between 18 and 20. And this one's going to change at 21. And these five are going to stay with you the whole time. And by visualizing that gives families a sense of purpose, of engagement in this that it's not all going to change all at once. That has been a really helpful tool of actually being able to see what it looks like.

00:12:24:02 - 00:12:32:06
Julia Resnick
That must make the experience much less overwhelming for families, as they're trying to navigate what is an incredibly complex health care system.

00:12:32:08 - 00:12:54:07
Tori Bahr, M.D.
Yes, I hope it does. The other thing that it does is it allows us to really identify how do we develop the right team for you. So the other thing I do is I see 20, 30, 40 year-olds who have had a challenging time finding their footing in the adult world, and they get sent back to me to help -

00:12:54:12 - 00:13:29:11
Tori Bahr, M.D.
can we create that team? So my record right now is a young patient who had been transferred her adult care into eight different systems. So it wasn't working for her or her mom. No one knew what any of the other providers were doing. And so that was sitting down. And again, drawing it out of this is eight different portals for you to log into, and it is just impossible to really make this work in the right way for the patient.

00:13:29:11 - 00:13:54:20
Tori Bahr, M.D.
So then it was talking through, you know, what are the major health systems in for adults in our community. And what would it look like if we tried to center within a hospital system A or B or C and then really be able to draw that out? So I get down and quite, particular around this is what it would look like if you chose health system A.

00:13:54:21 - 00:14:23:04
Tori Bahr, M.D.
This is the hospital you would go to. This is where your primary care could be. These are the specialists you could see. Do the same thing for B, do the same thing for C because it's so important on this transition process to make sure that people have the ability to make choices. Because one of the joys of transitioning into adulthood is that there are a lot more options in most cities for adult care.

00:14:23:06 - 00:14:50:09
Tori Bahr, M.D.
For my patients that live in Greater Minnesota or beyond, for the first time ever, they might be able to see a specialist in their community. That doesn't exist. There's not as many pediatric specialists out in Greater Minnesota as there are adult specialists. So it can be an opportunity to make a system in a health care system work for you in a way that previously was not even an option.

00:14:50:11 - 00:15:20:23
Julia Resnick
That's a really interesting idea. Just thinking about the how much more access they'll have moving into adult medicine. And I think that gets at the question of like how you can make the system work for you. So based on everything you've learned working with young people, working with their families as they've tried to successfully navigate this transition, what can hospitals and health systems - both pediatric ones and adult ones - do to create a more coordinated path that will help kids transition from pediatric care to adult care more smoothly.

00:15:21:01 - 00:16:04:16
Tori Bahr, M.D.
So my greatest wish is that hospitals and health care systems would just simply think about this time period. Just reflecting on what is the journey like for our patients who are 18, 21, 26 that are having their first visit to their new primary care doctor, who are having their first hospitalization, and the things that come up repeatedly from my patients are that they feel lonely in the hospital, that in the in the pediatric hospital, the experience of the young person in the hospital was a huge focus of the health care system.

00:16:04:18 - 00:16:39:10
Tori Bahr, M.D.
There were games, there were therapeutic rec. There was child life. There were nurses that liked hanging out with kids and making small talk. The other thing that happens for patients with medical complexity in an adult hospital is that sometimes their ability to be positioned in a safe way or a comfortable way can be very challenging. When you are a child size, but adult age,

00:16:39:12 - 00:17:02:14
Tori Bahr, M.D.
the adult hospital isn't set up with all of the different cushions and things to help make a bed comfortable. So reflecting on that, as well as some of my patients with muscular dystrophy and things have very limited mobility. And reflecting on the ability to use a call light. So, here at Gillette, we have lots of innovation that is happening.

00:17:02:14 - 00:17:28:21
Tori Bahr, M.D.
And some of that is our prosthetics and seating team who can MacGyver all sorts of things. So making really sensitive call lights for our patients who maybe can only wiggle their finger. I've had to bring one of those over to our patients in the adult hospital as well as we just think about making sure that they have equitable access to the things that ensure safety in the hospital.

00:17:28:23 - 00:18:22:10
Tori Bahr, M.D.
I think if we can just find ways to bring us together, there's things we can learn from the adult hospitals, too, as the pediatric hospital. This community and engagement and bridging the gap for patients is an opportunity that is there for those. And there are people that are interested in, engaged and want to work on this. So I'm so proud and happy to have such amazing collaborators across many of the adult hospitals in the Twin Cities, as well as working with the amazing team at Gillette, who is really focused and committed on not only having our patients have a wonderful experience at our hospital, at Gillette, but also to really thrive into adulthood and create

00:18:22:10 - 00:18:23:11
Tori Bahr, M.D.
their own story.

00:18:23:13 - 00:18:29:01
Julia Resnick
And may this conversation be only the first in many about how we can help kids better make that transition.

00:18:29:03 - 00:18:31:15
Tori Bahr, M.D.
Absolutely. I'm always here for it.

00:18:31:17 - 00:18:48:19
Julia Resnick
Dr. Barr, I just want to thank you for your passion and your commitment to this issue. The kids in your hospital are clearly in the best hands when they're children and when they're transitioning to adult. So I just want to thank you for all the work that you do and for sharing it with our listeners. It's really been a pleasure talking with you.

00:18:48:21 - 00:18:54:02
Tori Bahr, M.D.
Thank you. Julia, I'm so proud of the team that we have here at Gillette.

00:18:54:04 - 00:19:02:13
Tom Haederle
Thanks for listening to Advancing Health. Please subscribe and rate us five stars on Apple Podcasts, Spotify, or where