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Preparing to Launch-Preparing to Land: Transition to Adulthood Intervention
Pediatrics in Practice: Ann Modrcin, MD, EMBA, discusses the pediatric transition to adult care and best practices to achieve it. She also discusses values and pain points for families, and how providers can provide support through the transition.
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Learn more about Ann Modrcin, MD, EMBA
Ann Modrcin, MD, EMBA
Ann Modrcin, MD, EMBA Areas of Interest include Pediatric Rehabilitation Medicine Transition to Adult Health Care, Integrated team management of inpatients requiring rehabilitation, Neuromuscular Disease, Systems of Care for Complex Children, Amputation/prosthetics/myoelectrics.Learn more about Ann Modrcin, MD, EMBA
Transcription:
Preparing to Launch-Preparing to Land: Transition to Adulthood Intervention
Melanie: Welcome to Pediatrics in Practice with Children's Mercy Kansas City. I'm Melanie Cole, and I invite you to listen as we examine preparing to launch, preparing to land, transition to adulthood intervention.
Joining me is Dr. Ann Modrcin. She's the Division Director of Rehabilitation Medicine at Children's Mercy Kansas City. Dr. Modrcin, it's a pleasure to have you join us today. Tell us some of the challenges teens and young adults face when transitioning to adult healthcare. Tell us a little bit about some of the common medical and even psychosocial complications that they might face transitioning and why it might be even more challenging in that case.
Dr Ann Modrcin: Well, you know, transitions is something that has often been taken for granted. You might see a young person come to the doctor that they've been seeing their whole lives. And if that doctor isn't prepared to help them get to adult care, the visit might go like this, "Hey, this is your last visit. Good luck finding an adult provider. Have a good life." And that really doesn't take into the complexity of that child's and young adult's medical condition or how much stress a conversation like that would have.
So we take the premise that kids need to be prepared, all kids, not just kids with chronic medical conditions, but, you know, my own teen. She had to learn, "This is your insurance card. This is your pharmacy. And if you don't pick this pharmacy, it costs more. This is how you make an appointment. This is the kind of things you say to your doctor." So I always think of it as like learning how to adult with regard to your healthcare. They learn everything else, so really, it's important that they learn those very basic things about their healthcare. Kids that have more complex conditions of course need to learn a whole lot more, but it really gives us a foundation if everybody starts on the same page.
Melanie: What a great point. And it's certainly only true both for providers and parents, that this is not always an easy discussion to have, and that kids do need to learn how this all happens and how it all works, really. So tell us about Transition to Adulthood Program. What does that entail? And, in preparing pediatric patients for that transition, tell us some of the key success factors that you've found over your time.
Dr Ann Modrcin: Really, the program provides a framework for the healthcare teams, so they can guide both the parents and the young people towards transition. We use a framework based out of Washington, DC from an organization called Got Transition and they've helped us be involved in policy development.
As you might imagine, it's a good idea to do this, not just medically, but for the cost of medical care and so forth. And so, people in Washington and providers all over the country have said this is super important. However, only about 14% of young adults have ever had a conversation about transitioning to adult care and that's even though transition has been a push for about 10 years now.
So really, when I started the program, I took the concept that all children need this, not just say the spinal bifida program or the renal transplant program, but every child and by setting it up, that the families will see the same process at every clinic, they'll hear the same things, they'll have the same upbeat message about transition, then we can really engage and get on board with those families at a very early time so that they can really be successful.
It all starts about age 12 to 14 where we say, "You know, someday you're going to leave our hospital," rather than saying, you know, again at 21, "This is your last visit." How nice would that have been to say, "At 14, you're going to learn this. At 15, you're going to start performing this duty with regard to your health care. It might be filling your medication box or making sure you have enough pills for the day or need an appointment. And then later on, as you get to be an older teen or young adult, it might be, 'Do you know what happens if you use alcohol with your medication? Or if you don't eat and you have diabetes, do you understand how that could really be a bad thing?'" So really, bringing them on board so that they can understand their bodies and take more charge as time goes on.
The most important thing, I would say engagement. Again, if the child doesn't know that you're finding value in this conversation and the parent is not engaged, then nobody's gonna really care about it. If instead it's a positive message that, "I care enough about you, that I want to make sure that you stay healthy and that when you are ready to transfer to, say, an adult cardiologist because you have this incredibly complex congenital heart disease, that we're not going to leave you blowing in the wind. You're going to have a plan. You'll already have a partnership with that new doctor, because we're going to share medical records. We're going to have conversations and you'll be engaged in each step of this plan."
And I've seen it done poorly where, again, it's like that doctor saying, "Hey, this is your last visit. Have a good life." We can do better. And it really means a lot to our families if they see our engagement. And I expect their parents too and kids to engage as well.
Melanie: What an interesting topic we are discussing today and really so informative. So as you're telling us about values that are important to patients and their families during this planning process that you were just discussing, what are also some of the pain points that you've come across, both with other providers and with the parents and patients themselves?
Dr Ann Modrcin: Well, I think partly it's because there hasn't always been a program like this. And so rather than a consistent and seamless process, a child might get a message that, "Oh, we stopped seeing you at 18." Whereas the clinic next door says, "Oh, we'll see you through college." And that really produces a lot of anxiety, as well as lack of trust and faith in what's going on.
When they see a doctor and says, "Well, I don't really know any of the adult providers, and nobody's going to give you as good a care as we do," you can't expect success. And so to those challenges, I say to the pediatric providers, "Well, guess what? You need to go across the street and shake some hands and learn who people are and make some connections." Because if we think about engagement, not just within our walls, we think of it as a community. The healthier we make our transitions, the healthier we create our community.
We can't say good care stops at pediatrics. That's crazy. we really do need to embrace the concept of working together and that has been a pain point. And we have really good relationships with some of the local and regional hospitals. And we can call a single person and say, "This patient's coming. They have five different specialties. Can you help me set those up?" And they will. They'll say, "Okay. this primary care doctor is probably going to be a good fit. And we have these specialists that are available to be involved in the care."
So, we have a single point of contact that can make all those connections and that's as opposed to other institutions who just haven't wanted to play. And instead of being so forthcoming with help, they basically say, "Well, they can just call for appointments." You know, that's, not a good system. That's not seamless care. And when patients don't get seamless care, a couple of really bad things happen.
If they miss an appointment, they don't get that preventative care they need. If they run out of medications, their condition could become worse. And further on from there, they could end up in the emergency room or in a hospital where they don't have any medical records because as you know, medical records, aren't shared across institutions for the most part. So that's care in crisis and that's a high likelihood for a patient to have a devastating outcome, even death.
So again, it's less expensive and it's good for the soul to do this well and to transition carefully and making sure the connections are all in place.
Melanie: If a patient has a disability or chronic health condition, how involved should the pediatric provider be in this transition? And once the transition has taken place, when is it advisable that they then back off and leave it to adult physicians to manage? How much monitoring do they do?
Dr Ann Modrcin: You know, that's a really interesting question because it used to be that a lot of people with chronic conditions didn't live to adulthood. And so a lot of adult providers kind of think of them as those are childhood conditions and we don't need to worry. Well, when you think about it, kids with CF now live into their fifties and sixties, that can no longer be a pediatric condition. The same is true for diabetes and Down syndrome and cerebral palsy and spinal bifida. So we really do have to re-engage the adult providers to say, "This is no longer a pediatric condition and we can help you to see how to care for them."
But the issue with kids with special needs can be variable. In my own clinic, in the rehabilitation clinic, roughly a third of my patients will go on to be completely independent with all their cares with training. Another third will continue to need ongoing help from a parent guardian or a care provider. And that might be financially making decisions for healthcare, it might mean making appointments because that part of it is more difficult or any other aspect of arranging care.
And I've got another third. The last third would be completely dependent on adults to provide their ongoing care and decision-making. And so with that group, we have to really put things into place like guardianship and durable power and all those resources they need to still find care. They're still adult bodies with adult conditions when they become adults. And so they can't drop off the screen. The pediatric providers need to provide some insight and guidance, like how often should we get these lab tests? Do they still need hip x-rays now that they're skeletally mature? Do we still need to do XYZ?
And so if we can over time, with the adult providers in mind, develop kind of a playbook, you know, this is a playbook for diabetes, this is a playbook for asthma, this is a playbook for cerebral palsy, things you should keep in mind, not telling them what to do, but kind of telling them what are the signs, what are the things that you should worry about? And what are the things that'll just give you the peace of mind that everything's going well?
If we can send them out with a summary that gives them details about a sick plan for somebody with a muscle disease, you know, increase their respiratory care, increase their support, this is when to call, this is when to really be concerned, then we've not thrown them to someone who doesn't know what they're doing. We've given all the players, again, a framework that we're sharing and often developing together.
We would like to have a system, we haven't quite done this part yet that, we can link them back into our system, just for a questionnaire, how's it going? have you experienced complications? Have there been other issues? And most importantly, how can you help us improve the process? That way, again, we'll strengthen our relationships with adult providers and really, in the future, be able to provide a network of health care throughout our community. And that would be very strong. And again, it starts with pediatrics to adult care, but I think it really stretches beyond that because of the emphasis on community health.
Melanie: What a great idea that questionnaire is because then you can hear from patients themselves and their families on how it went and what they feel might have been able to have been done differently. That's a great idea. So as we wrap up, please give us your top recommendations that you'd like physicians or other healthcare providers to consider when they're creating this successful transition experience, monitoring their patients as they go through this. How can providers serve as an advocate for their patients as they transition to adulthood?
Dr Ann Modrcin: So at Children's Mercy, we now have 36 programs encompassing 18 different specialties that are integrated into our network for transitions. They follow the same policy. That means there's still a lot that aren't, but I have very strong support from administration that they want everybody to get on board.
So that's the first thing, engage in the process. The process will help you. Our public webpage is full of resources. We have created the first interface with Cerner, so it's incorporated into the electronic medical record. We score people. We score like if your clinic is participating, we can dial down by specialists, by age group, by location, how well, how often they're having these conversations and if they're setting goals, so we can help them if they're in a place where they're not doing well.
But really to engage in the process and see the value is really going to, again, help the health of their child. I think that transition, it's the last thing we do, but it may be the most important thing we do to set them free from our institution with a healthy start. And our failure to do so could really have devastating consequences. So again, we can help, we can make it easier. Transition isn't easy. If it was, everybody would be doing it.
We have the largest integrated network right now at Children's Mercy of anybody in the country. And yet, again, not everybody's onboard even in our own institution. The reason we have all these resources is that we can have people from all over the country, actually, all of the world. They've access to our program, our processes, our pamphlets and booklets. we have over 120 hits a month just on our public website. And we're there to help.
Terry, my transition manager and I have consulted to major children's hospitals throughout the country as they try to develop their own process. So again, the word is out there and people want to get on board and I just would encourage pediatricians that it isn't that hard. We can help and it's certainly worth it. The families are grateful, the kids become more independent and self-assured and that's a beautiful thing to see.
Melanie: It certainly is. What an important topic. Thank you so much. I can hear the passion for this topic in your voice, Dr. Modrcin. Thank you so much for joining us. This has been Pediatrics in Practice with Children's Mercy Kansas City. To refer your patient or for more information, please visit childrensmercy.org to get connected with one of our providers. Please also remember to subscribe, rate and review this podcast and all the other Children's Mercy podcasts. I'm Melanie Cole.
Preparing to Launch-Preparing to Land: Transition to Adulthood Intervention
Melanie: Welcome to Pediatrics in Practice with Children's Mercy Kansas City. I'm Melanie Cole, and I invite you to listen as we examine preparing to launch, preparing to land, transition to adulthood intervention.
Joining me is Dr. Ann Modrcin. She's the Division Director of Rehabilitation Medicine at Children's Mercy Kansas City. Dr. Modrcin, it's a pleasure to have you join us today. Tell us some of the challenges teens and young adults face when transitioning to adult healthcare. Tell us a little bit about some of the common medical and even psychosocial complications that they might face transitioning and why it might be even more challenging in that case.
Dr Ann Modrcin: Well, you know, transitions is something that has often been taken for granted. You might see a young person come to the doctor that they've been seeing their whole lives. And if that doctor isn't prepared to help them get to adult care, the visit might go like this, "Hey, this is your last visit. Good luck finding an adult provider. Have a good life." And that really doesn't take into the complexity of that child's and young adult's medical condition or how much stress a conversation like that would have.
So we take the premise that kids need to be prepared, all kids, not just kids with chronic medical conditions, but, you know, my own teen. She had to learn, "This is your insurance card. This is your pharmacy. And if you don't pick this pharmacy, it costs more. This is how you make an appointment. This is the kind of things you say to your doctor." So I always think of it as like learning how to adult with regard to your healthcare. They learn everything else, so really, it's important that they learn those very basic things about their healthcare. Kids that have more complex conditions of course need to learn a whole lot more, but it really gives us a foundation if everybody starts on the same page.
Melanie: What a great point. And it's certainly only true both for providers and parents, that this is not always an easy discussion to have, and that kids do need to learn how this all happens and how it all works, really. So tell us about Transition to Adulthood Program. What does that entail? And, in preparing pediatric patients for that transition, tell us some of the key success factors that you've found over your time.
Dr Ann Modrcin: Really, the program provides a framework for the healthcare teams, so they can guide both the parents and the young people towards transition. We use a framework based out of Washington, DC from an organization called Got Transition and they've helped us be involved in policy development.
As you might imagine, it's a good idea to do this, not just medically, but for the cost of medical care and so forth. And so, people in Washington and providers all over the country have said this is super important. However, only about 14% of young adults have ever had a conversation about transitioning to adult care and that's even though transition has been a push for about 10 years now.
So really, when I started the program, I took the concept that all children need this, not just say the spinal bifida program or the renal transplant program, but every child and by setting it up, that the families will see the same process at every clinic, they'll hear the same things, they'll have the same upbeat message about transition, then we can really engage and get on board with those families at a very early time so that they can really be successful.
It all starts about age 12 to 14 where we say, "You know, someday you're going to leave our hospital," rather than saying, you know, again at 21, "This is your last visit." How nice would that have been to say, "At 14, you're going to learn this. At 15, you're going to start performing this duty with regard to your health care. It might be filling your medication box or making sure you have enough pills for the day or need an appointment. And then later on, as you get to be an older teen or young adult, it might be, 'Do you know what happens if you use alcohol with your medication? Or if you don't eat and you have diabetes, do you understand how that could really be a bad thing?'" So really, bringing them on board so that they can understand their bodies and take more charge as time goes on.
The most important thing, I would say engagement. Again, if the child doesn't know that you're finding value in this conversation and the parent is not engaged, then nobody's gonna really care about it. If instead it's a positive message that, "I care enough about you, that I want to make sure that you stay healthy and that when you are ready to transfer to, say, an adult cardiologist because you have this incredibly complex congenital heart disease, that we're not going to leave you blowing in the wind. You're going to have a plan. You'll already have a partnership with that new doctor, because we're going to share medical records. We're going to have conversations and you'll be engaged in each step of this plan."
And I've seen it done poorly where, again, it's like that doctor saying, "Hey, this is your last visit. Have a good life." We can do better. And it really means a lot to our families if they see our engagement. And I expect their parents too and kids to engage as well.
Melanie: What an interesting topic we are discussing today and really so informative. So as you're telling us about values that are important to patients and their families during this planning process that you were just discussing, what are also some of the pain points that you've come across, both with other providers and with the parents and patients themselves?
Dr Ann Modrcin: Well, I think partly it's because there hasn't always been a program like this. And so rather than a consistent and seamless process, a child might get a message that, "Oh, we stopped seeing you at 18." Whereas the clinic next door says, "Oh, we'll see you through college." And that really produces a lot of anxiety, as well as lack of trust and faith in what's going on.
When they see a doctor and says, "Well, I don't really know any of the adult providers, and nobody's going to give you as good a care as we do," you can't expect success. And so to those challenges, I say to the pediatric providers, "Well, guess what? You need to go across the street and shake some hands and learn who people are and make some connections." Because if we think about engagement, not just within our walls, we think of it as a community. The healthier we make our transitions, the healthier we create our community.
We can't say good care stops at pediatrics. That's crazy. we really do need to embrace the concept of working together and that has been a pain point. And we have really good relationships with some of the local and regional hospitals. And we can call a single person and say, "This patient's coming. They have five different specialties. Can you help me set those up?" And they will. They'll say, "Okay. this primary care doctor is probably going to be a good fit. And we have these specialists that are available to be involved in the care."
So, we have a single point of contact that can make all those connections and that's as opposed to other institutions who just haven't wanted to play. And instead of being so forthcoming with help, they basically say, "Well, they can just call for appointments." You know, that's, not a good system. That's not seamless care. And when patients don't get seamless care, a couple of really bad things happen.
If they miss an appointment, they don't get that preventative care they need. If they run out of medications, their condition could become worse. And further on from there, they could end up in the emergency room or in a hospital where they don't have any medical records because as you know, medical records, aren't shared across institutions for the most part. So that's care in crisis and that's a high likelihood for a patient to have a devastating outcome, even death.
So again, it's less expensive and it's good for the soul to do this well and to transition carefully and making sure the connections are all in place.
Melanie: If a patient has a disability or chronic health condition, how involved should the pediatric provider be in this transition? And once the transition has taken place, when is it advisable that they then back off and leave it to adult physicians to manage? How much monitoring do they do?
Dr Ann Modrcin: You know, that's a really interesting question because it used to be that a lot of people with chronic conditions didn't live to adulthood. And so a lot of adult providers kind of think of them as those are childhood conditions and we don't need to worry. Well, when you think about it, kids with CF now live into their fifties and sixties, that can no longer be a pediatric condition. The same is true for diabetes and Down syndrome and cerebral palsy and spinal bifida. So we really do have to re-engage the adult providers to say, "This is no longer a pediatric condition and we can help you to see how to care for them."
But the issue with kids with special needs can be variable. In my own clinic, in the rehabilitation clinic, roughly a third of my patients will go on to be completely independent with all their cares with training. Another third will continue to need ongoing help from a parent guardian or a care provider. And that might be financially making decisions for healthcare, it might mean making appointments because that part of it is more difficult or any other aspect of arranging care.
And I've got another third. The last third would be completely dependent on adults to provide their ongoing care and decision-making. And so with that group, we have to really put things into place like guardianship and durable power and all those resources they need to still find care. They're still adult bodies with adult conditions when they become adults. And so they can't drop off the screen. The pediatric providers need to provide some insight and guidance, like how often should we get these lab tests? Do they still need hip x-rays now that they're skeletally mature? Do we still need to do XYZ?
And so if we can over time, with the adult providers in mind, develop kind of a playbook, you know, this is a playbook for diabetes, this is a playbook for asthma, this is a playbook for cerebral palsy, things you should keep in mind, not telling them what to do, but kind of telling them what are the signs, what are the things that you should worry about? And what are the things that'll just give you the peace of mind that everything's going well?
If we can send them out with a summary that gives them details about a sick plan for somebody with a muscle disease, you know, increase their respiratory care, increase their support, this is when to call, this is when to really be concerned, then we've not thrown them to someone who doesn't know what they're doing. We've given all the players, again, a framework that we're sharing and often developing together.
We would like to have a system, we haven't quite done this part yet that, we can link them back into our system, just for a questionnaire, how's it going? have you experienced complications? Have there been other issues? And most importantly, how can you help us improve the process? That way, again, we'll strengthen our relationships with adult providers and really, in the future, be able to provide a network of health care throughout our community. And that would be very strong. And again, it starts with pediatrics to adult care, but I think it really stretches beyond that because of the emphasis on community health.
Melanie: What a great idea that questionnaire is because then you can hear from patients themselves and their families on how it went and what they feel might have been able to have been done differently. That's a great idea. So as we wrap up, please give us your top recommendations that you'd like physicians or other healthcare providers to consider when they're creating this successful transition experience, monitoring their patients as they go through this. How can providers serve as an advocate for their patients as they transition to adulthood?
Dr Ann Modrcin: So at Children's Mercy, we now have 36 programs encompassing 18 different specialties that are integrated into our network for transitions. They follow the same policy. That means there's still a lot that aren't, but I have very strong support from administration that they want everybody to get on board.
So that's the first thing, engage in the process. The process will help you. Our public webpage is full of resources. We have created the first interface with Cerner, so it's incorporated into the electronic medical record. We score people. We score like if your clinic is participating, we can dial down by specialists, by age group, by location, how well, how often they're having these conversations and if they're setting goals, so we can help them if they're in a place where they're not doing well.
But really to engage in the process and see the value is really going to, again, help the health of their child. I think that transition, it's the last thing we do, but it may be the most important thing we do to set them free from our institution with a healthy start. And our failure to do so could really have devastating consequences. So again, we can help, we can make it easier. Transition isn't easy. If it was, everybody would be doing it.
We have the largest integrated network right now at Children's Mercy of anybody in the country. And yet, again, not everybody's onboard even in our own institution. The reason we have all these resources is that we can have people from all over the country, actually, all of the world. They've access to our program, our processes, our pamphlets and booklets. we have over 120 hits a month just on our public website. And we're there to help.
Terry, my transition manager and I have consulted to major children's hospitals throughout the country as they try to develop their own process. So again, the word is out there and people want to get on board and I just would encourage pediatricians that it isn't that hard. We can help and it's certainly worth it. The families are grateful, the kids become more independent and self-assured and that's a beautiful thing to see.
Melanie: It certainly is. What an important topic. Thank you so much. I can hear the passion for this topic in your voice, Dr. Modrcin. Thank you so much for joining us. This has been Pediatrics in Practice with Children's Mercy Kansas City. To refer your patient or for more information, please visit childrensmercy.org to get connected with one of our providers. Please also remember to subscribe, rate and review this podcast and all the other Children's Mercy podcasts. I'm Melanie Cole.