Transitioning Pediatric Patients with Neurological Conditions to Adult Care

Podcast Transcript

Intro: Neuro Pathways a Cleveland Clinic podcast, exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab and psychiatry.

Glen Stevens, DO, PhD: The 2016 National Survey of Children's Health estimated that 85% of use age 12 to 17 did not receive adequate preparation for their transition from pediatric to adult care. As a result, the American Academy of Pediatrics, the American Academy of Family Physicians and the American College of Physicians published a clinical report in support of the healthcare transition of adolescents to adult care in the medical home.

In today's episode of neuro pathways, we're discussing how a formal transition process has been developed and applied to the neurological patient population. I'm your host Glen Stevens, neurologist/neuro-oncologist in Cleveland Clinic's Neurological Institute. I'm very pleased to have Dr. Deepak Lachhwani, Dr. Tatiana Falcone and nurse practitioner Carrie Cuomo join me for today's conversation. Dr. Lachhwani is a pediatric epileptologist and Dr. Falcone a psychiatrist, both in Cleveland Clinic's Charles Shor Epilepsy Center. Carrie holds a doctorate in nursing practice and is director of Advanced Practice Nursing in Cleveland Clinic's Pediatric Institute. Welcome to Neuro Pathways.

Deepak Lachhwani, MD: Thank you, Dr. Stevens.

Tatiana Falcone, MD: Thank you so much for the invitation.

Carrie Cuomo, DNP, CPNP: Thank you Dr. Stevens.

Glen Stevens, DO, PhD: Let's get started. Within the context of this clinical report by the various panels, how do we define transition of care?

Carrie Cuomo, DNP, CPNP: Transition of care is really defined as a process where you're moving from a child or family-centered model of health care to an adult or patient-centered model of care. It could be moving from provider to provider, but that doesn't necessarily happen. If you're within a practice that can see patients of all ages, then it's just the way you are treating that individual patient that changes.

A family practice office, for example, can continue to see the adolescent into adulthood, but they're going to change the way they talk and address that individual patient. Instead of looking at the family for appointments and scheduling and education, they're going to look at the individual patient by themselves and we can do the same thing in epilepsy.

Glen Stevens, DO, PhD: So in the neuro-oncology field, one of the problems that we run into is that pediatric neuro-oncology patients need to be transferred to an adult patient at some point. It always amazes me sometimes how long the pediatricians will look after their patients. Sometimes they'll be seeing patients in their twenties, thirties, forties, fifties, sixties. There's a lot of separation anxiety as it goes through. A lot of the pediatric patients require long-term neurologic care. Can we talk about the opportunity for transition within the neurologic field itself? How do you find it? How difficult is it for you to let go of your patients? How difficult is it for them to let go of you? I imagine very difficult.

Deepak Lachhwani, MD: I absolutely agree with you, Dr. Stevens. I think that it is just one of the aspects of healthcare where we've just not had a good connecting the dots when it comes to a smooth move from their pediatric or youth age group to an adult age group. And I think that is probably one of the reasons why it has been so difficult for pediatricians or pediatric healthcare providers to feel like that they can let go of their families/patients, because they've been really bond with them since early childhood, if not since birth. For them to know that there is not a good process in place so that they can really move or graduate smoothly into the adult world is quite disconcerting. If you can imagine if that is disconcerting for the pediatric care providers, it is 10 times, if not more so for the parents and family members of the pediatric patient.

There's a lot of apprehension and I think that is really more on account of lack of a process in place. I think that the more we look at this entire gamut of healthcare, we realize that there is about 30 million US young adults that are transitioning to the adult group every year, they're transitioning to adulthood every year. There is about 25 to 30% of them who don't have any insurance anymore because now they're beyond the family’s health insurance plans. About 30% of them don't have any primary care provider anymore because at 18, many pediatric practices would say you can right now find somebody, but there is no process to make that transition happen.

I think that there is a lot of opportunity, especially in chronic illnesses, especially when it comes to brain health, because that is one of the more apprehensive areas for any medical care provider in general, for us to try and smooth this process in a way that the healthcare needs are met with in the most appropriate way and the best quality of care can be maintained for young adults as they transition into adulthood.

Glen Stevens, DO, PhD: I'm just curious, who's the driver? I suspect it's probably more the pediatric physician or practitioner that's the driver as opposed to the patient, or are the patients the driver for transitioning?

Carrie Cuomo, DNP, CPNP: We really ask the patients to be involved from the beginning. The idea of transition is to look at it as a process and we want to start early. It is suggested in that report that you referenced at the introduction. It's important to start at age 12 to 14, introducing this idea. Now that is not to say, anybody's asking a patient to transfer their care at age 14 but we want to talk to the patient and the family and say, we recognize that this isn't forever in pediatrics, that we're going to need to help you along the way. We're going to do it in a systematic process approach, we have a plan for you and we're going to develop it with you along the way. That's really, when it is recommended to start. Anywhere from 14 to 18, we start tracking their readiness.

We have, with the help of Got Transition, which is a HRSA funded organization that has really been the front runner in the healthcare transition research process. We implemented their six core elements of transition here at the Cleveland Clinic. We have a readiness assessment that we can send out through MyChart, and it will go to the individual patient and ask them questions that help the provider then figure out where they are in the process. If they're fully independent and they know their healthcare, if they know their prescriptions, if they know what their disease process is, and they can communicate it to somebody. They're further ahead in the process, then somebody who can't do some of those things.

Then through their next few years, we monitor their readiness and we start planning. We look at goals with them as to what they want in an adult provider, what they need to learn for themselves, what they need to take over. Can they make their own appointment? Do they know how to call the office to do that? Do they know how to use MyChart to schedule things? We work over as much time as they need to go forward.

The transfer of care to... if they're going to another provider, actually isn't until number five in the whole process. It comes later and so there's a lot of planning that goes in prior to that. We also want to keep the doors open. There is a step six that's called transfer completion. We want to make sure that there's an open line of communication between those providers. The one that is releasing that patient should still be able to answer questions if there's something that comes up so that the patient doesn't feel like they're stranded in a brand new office with somebody.

Glen Stevens, DO, PhD: Yeah, sounds like a great process. What happens for patients that don't go through this process, that don't get transitioned?

Carrie Cuomo, DNP, CPNP: The research has shown that their outcomes are poorer. Their chronic health is disease processes are not maintained as well. Examples in sickle cell populations, those are the young adults that end up in emergency rooms. As Dr. Lachhwani said, 30% of this age group, 18 to 25 doesn't have a primary care physician. Think of all of the primary care illnesses that could be intervened with early, if treated early. If you don't have a primary care provider it's harder to find the illnesses early. They have poorer outcomes, the cost of care is increased if you're not treating a chronic illness and they show up in the emergency room. It would be obviously more cost effective to treat that in the outpatient setting.

Glen Stevens, DO, PhD: The report came out in 2016. When did we start developing a formal transition process?

Carrie Cuomo, DNP, CPNP: We at the Cleveland Clinic started at around 2014. There was a predecessor to that 2016 report back in 2011. That's when Got Transition really started going. What happened 2014, everything was very grassroots so there would be endocrinology, for example, in pediatrics was very involved and they had a process for themselves. Nephrology had a process for their renal transplant patients, but not for everybody else. There were little pockets of this going on in various places but not a universal program for everybody. In 2014 is when we really started bringing both adult providers and pediatric providers together to start talking about how we could make a more universal process for everybody.

Glen Stevens, DO, PhD: Deepak, did you want to add?

Deepak Lachhwani, MD: Yeah, just in the more recent times, I think this concept of Differentiated Lifetime Care became something that came on the radar for the entire institution about 2019, if I'm not mistaken. Since the last couple of years, there has been a very nice and organized proactive approach to trying to make healthcare transition happen in a seamless fashion for the youth has been like in the limelight.

As of 2020, I think Carrie can speak to it within regards to the milestones. As of 2020, we've had a very careful look and a launch when it comes to the policy statement for healthcare transition and pilot projects, when it comes to some different areas where people have proactively started ironing out the details to make some best practices happen for other subspecialty areas also to pick up and take it from there. Dr. Falcone, Carrie, do you want to add to it in terms of since when the more organized effort has to for transition?

Carrie Cuomo, DNP, CPNP: Sure, the 2020 I was lucky enough with my partner in crime, Julie Corder who's another nurse practitioner that I worked with on transition. We were lucky enough to be introduced to Dr. Kendalle Cobb. At that point she was working on the Differentiated Lifetime Care and realized the importance that transition had across the lifespan of these patients that we all take care of. That's when a more robust initiative took hold here. We have now had seven pilot sites start a formal transition plan and process, epilepsy being one of those. That's how I was introduced to Dr. Lachhwani. We have several other locations that have begun implementing this process for their whole teams.

Glen Stevens, DO, PhD: Deepak and Tatiana, that's a nice transition. You're both in the epilepsy area. Why don't you tell our listeners a little bit about how you in epilepsy have looked at transition plans for your patients.

Tatiana Falcone, MD: In epilepsy, probably since around 2007, we started looking at the issue as Carrie said, in 2014 is when we started trying to put the plan more in place. But we see that in patients with chronic illness that have neurologic issues, psychiatric issues and they have other complex medical issues, unless we have a concerted effort to make this change, identify a pediatrician, identify the internal medicine provider, identify the adult epileptologist, the psychiatrist. As Carrie was saying, these patients end up getting their care from the emergency room and then having a lot more problems and medical issues because they don't know what provider to consult when they're having any problems.

Deepak Lachhwani, MD: If I can add to that, Dr. Stevens, in epilepsy we are lucky because we have the spectrum of pediatric as well as adult care providers under the same roof. We have recognized that this is an area of opportunity and also a gap, unfortunately, for many of the patients that don't have a smooth process of transition. We've looked at it programmatically together with Dr. Falcone and Carrie. We look at it as two buckets. If a patient is about 14, 15, 17, 18, we look at their two aspects to their needs, which require transition. Simply speaking from a 10,000 foot view, there is the medical aspect, whether it is neuromuscular disease or epilepsy that requires a neurologist's care or a physical therapy and occupational therapy care or behavioral healthcare, whether it is pulmonary care. There is a medical aspect, the focus in epilepsy being the seizure medical aspect but some other key subspecialties that are needed. That's the medical bucket of things that require transition, which we means finding a provider that can take care of epilepsy as an adult provider or behavioral health as an adult behavioral health provider or another subspecialty.

The other aspect, which I think is just as important, if not, sometimes more important is the non-medical aspect of transition. Now this is not a 12 or 13 year old that can go to a daycare center or a school that is meant for youth that are less than 18, 20 years of age. This is now a young adult that probably wants to participate in the community. Health programs in the community, recreational programs in the community, this is probably a youth that will need to live at some level independently, autonomously or in the supervised healthcare setting, residential setting. There is a whole bucket of non-medical aspects of transition, which are very relevant. Those are probably the source of the most unhappiness or dissatisfaction when it comes to the family units of youth 25, 30, 40 year old that need the transition happening. There are guardianship issues, there are insurance issues, there are other legal issues that are relevant for the state or the community in which they live in. We have tried to approach it simply breaking into these two buckets of medical needs and non-medical needs.

The backdrop of this is really, let us say a care provider like myself as an epileptologist or Dr. Falcone. The link between these is really in our minds, a navigator. The first intervention that we think of in the background is to look at a patient's needs, tailor them to the one or two or five important needs, epileptologists, psychiatrist, what have you, and then have a navigator intervene by virtual meeting with such a family and lay out the ground rules, the lay out the lay of the land of what might be involved in transition and see how we can meet their needs.

From then on, make this process of transition happen in a way that we can really handhold them across the threshold rather than dump as a transfer of care. Just one fine morning, you cannot see your pediatric provider now go and find an adult provider. I think this is how we're looking at it in a big picture view. Obviously this is a process that requires a lot of learning and we are in that phase right now, but I think we've had some initial success in trying to see how we can make the needs happen.

Glen Stevens, DO, PhD: Tatiana, young adults are increasingly recognized as a vulnerable population in terms of high rates, as mentioned earlier, of behavioral health risk. Can you talk about your specific role in the transition for these patients?

Tatiana Falcone, MD: One of the things that we're actually trying to do is starting from the time they're 16, and during those years before the moment of transition identifying what are their needs. Do the patient know how to take their medication? Do the patient know how many medications they take? Who are they seeing for each one of their providers and why are they seeing them? How much support the patient is going to need from the family? Are they going to need guardianship? And using some different tools that are actually now available in Epic trying to track the progress that we get with the patient each year. By the time the patient gets to 18, it won't be just a transfer. They will know all the important things and they will be able to advocate for themselves, know how to make an appointment.

In patients with behavioral health issues we know that one of the major transitions is college. When the kids move out to college, they start living in a different place, most of them. Trying to manage their own medications and some of them don't even know how to call for a prescription, who to call. Sometimes the address are not updated so the prescription might be sent to a parent's house. We try to look at the whole picture and prevent and make sure that if the patient is stable, we try to transition them right there before 18, but if the patient is about to move and we still feel like they're not where they supposed to be, we keep them one more year until we feel like emotionally and medically they are more stable to have a successful transition.

Glen Stevens, DO, PhD: The term that comes to mind is a village. That it takes a village and it really does. There's obviously other members involved in the team. Who are the other folks that you need? Sounds like you need a lot, but who else is involved in the process?

Carrie Cuomo, DNP, CPNP: Everybody that touches the patient. The parent and the patient are absolutely involved in the process. We have PSSs that are trained through our pilots on what transition is. We developed an education module so that everybody who is a part of the clinical team can take it and they are trained what transition is, what the steps are and the things that we have in place here at the Cleveland Clinic. So PSSs, RNs, LPNs, MAs, and the office social work. Anyone that you can think of that as a caregiver and touches the patient has a role in this process.

Glen Stevens, DO, PhD: If I'm not a member of a big healthcare system, and I'm sitting out there and I'm listening to this, I'm thinking, "How do I do this in my patient population?" What do we tell pediatricians out there that don't have as big a system? How can they get on board with this? What do they do?

Carrie Cuomo, DNP, CPNP: I would say the first place to look would be gottransition.org. That is a website that is a wealth of information for both patients and families researchers. They have different categories and I can say, honestly, every time I go on that website, I find something new. It has been a wealth of information for us.

Glen Stevens, DO, PhD: Deepak or Tatiana, anything to add to that?

Tatiana Falcone, MD: Yeah, there's so many tools in that website, right. Some of them are even target by different specifics by age, by behavior. One of the things that I am seeing with our transition clinic is the parents feel this is so helpful for them. They feel like, I was so afraid to what was going to happen after 18. The fact that you're empowering the family with the information that they need and also a young adult who is now going to start this journey where they have to be more responsible of their own care. It really give them a lot of the tools that they need. I think they feel really encouraged. Looking at the website, you can find a lot of the tools that we're talking about. I know the American Academy of Neurology also has one new tool they developed for patients with neurological conditions. I think our first stop has really been like gottransition.org.

Glen Stevens, DO, PhD: Go ahead, Deepak.

Deepak Lachhwani, MD: Every patient facing care provider needs to be involved from grassroots up, but also from leadership down, I think the awareness has to be across the board. The days of trying to find a pediatric champion rheumatologist who will keep taking care of these patients until they are 40, 50, 60, or a pediatric champion endocrinologist, or a pediatric champion, any subspecialty provider that'll care of these patients. I think that era is gone. We really have to look at it as a programmatic change where the pool of care providers across the spectrum of different ages have to be ready. I think we have to partner and educate our adult healthcare providers at every level that these are going to become adults one day and they cannot just hang on with a champion pediatrician that can continue to provide care for them.

As a simple example, I'll tell you in the last five years, American Academy of Neurology, they have increased about 53% general neurology training positions. They have increased about 30% pediatric neurology training positions. The pool of pediatric providers is really never going to be as large or increase as well as the adult care providers. I think it's about time that we can start just partnering and educating our adult providers in a way that transition is... there's no fear factor or apprehend factor about how are we going to take care of these overgrown children. This is not what it is, these are young adults, these are adults that really need care of the highest quality. There is no reason why we cannot partner with our adult care providers to make this happen.

Glen Stevens, DO, PhD: In closing, any additional tips or recommendations that we haven't talked about that you think might be important?

Deepak Lachhwani, MD: I would say that the tools at Got Transition about just becoming aware of what transition is, I think that's an educational tool. Within the Epilepsy Center a high percentage, more than 50% of care providers are familiar with it across the board, pediatric to adults. I think education is the first step. Then just recognizing the Differentiated Lifetime Care is the best way to take care of what is otherwise the largest portion of the population that does ED use less than 75 years of age is the youth that just don't have anywhere to go in a meaningfully transitioned way. They really use the ED and urgent care a lot and that's just poor quality of care at the highest cost.

Tatiana Falcone, MD: I will say for the providers and start the process early. I think we definitely identify the kids with medical complexities are harder to transition because of some of those issues. Starting the process when they're 14 to 16 will help us get them ready by the time they're 18.

Glen Stevens, DO, PhD: Great, so I think that we all just need to make sure we're intentional and bringing it to light helps everyone. In closing, I'd like to thank you three for joining us today. It's been very educational for myself and I'm sure our listeners. It's wonderful to hear all the intentional work that you are doing to try to move the pediatric patients forward. Deepak, I know you don't like the word champion anymore, but I guess we might need more adult champions to accept these patients and be willing to move forward with it. I'd like to thank you three for joining me today and look forward to seeing you again in the future in all the great things you're doing. Thank you.

Deepak Lachhwani, MD: Thank you, Dr. Stevens.

Carrie Cuomo, DNP, CPNP: Thank you, Dr. Stevens.

Tatiana Falcone, MD: Thank you so much for the invitation.

Closing: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play Spotify, or wherever you get your podcast. Don't forget you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our consult QD website. That's consultqd.clevelandclinic.org/neuro or follow us on Twitter @CleClinicMD, all one word. Thank you for listening.