All right, good morning, everyone, and thank you so much, the chair, the co-chairs, for the opportunity, actually, to contribute in writing this chapter in current concepts, and also, very importantly, for letting me come and talk about it today. My name is Odira Nwankwo. I'm one of the pediatric ICUs at Nemours Children's Hospital. I'm going to be speaking on transitioning from pediatric to adult critical care services. And I don't have any conflict, but the only disclosure that I'll have to make is that I'm not a content expert on this field. But I wrote the chapter, and I think we're all going to walk through it together. The objectives of my talk today, the most important one there is to discuss the process of a structured health care transition, applying the concepts of the six core elements of health care transition for PICU patients, but also, very importantly, to solicit all you guys' consideration in applying this concept in your PICU. The outline that I will take is to discuss the what, the why, and the how. And by that, I mean we're going to talk about what does health care transition actually mean, and what's the rationale, why do we think about it, why do we want to do it. And then we'll look at transition pathways. We'll discuss a little bit in details about the concepts of the six core elements of health care transition. I will point you guys to a few transition resources, and we'll look at a few challenges in transition, and then I will conclude. Health care transition, what does it mean, really? A couple of people define this differently. But I saw this article, and I kind of liked it. The reason I liked it is that it talks about how difficult it is to define these concepts. And I'm going to read out the way they defined it. And the topic for this paper was health care transition, the struggle to define itself. And this is their definition. Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult care services, and to transition successfully into adulthood and beyond. That's a lot of words. I kind of tried to make it a little bit simpler, that health care transition is just a process of moving from a child, family-centered model of health care to an adult, patient-oriented model of health care. And this is a process. If it's a process, it has planning that we're going to talk about a little bit more in detail as we go along. And we'll have transfer. After you make your plans, you transfer these kids, and then you integrate them into adult, patient-oriented model of health care. Why do we do this? What's the rationale? The overall rationale is just to improve overall quality of life. It doesn't matter what you do. At the end of the day, it was the quality of life for this patient. And secondly, also to reduce their hospital readmission. In the ICU, health care transition is more pronounced among our adolescents that have chronic complex medical conditions and those that have developmental disabilities. We all know in PICU that this number, this segment of population is increasing continuously. And they're increasing because of improved health care services. They're increasing because of improved technology, health care technology. And because they're increasing, we need health care transition, a formal health care transition. We've also noted that in the absence of a structured health care transition, there's usually a decline in health among this population. This probably is due to a gap in their care of poor adherents. This is the statistic that's a little bit disturbing. That only 17% and 14% of youths with and without special needs respectively received a formal transition guideline. That's actually quite small. We're talking about one in five, one in seven. And I'm sure that most of us probably haven't really considered this. And my hope is that at the end of this talk, we should begin to kind of bring it to our consciousness in our ICU. How do we do this actually? The American Academy of Pediatrics and the American Academy of Family Physicians and the American College of Physicians in 2011 in their clinical reports introduced the concept of the six core elements of health care transition. And this concept defines the basic component of a structured transition process with timelines. We're going to look at that as we go along. And each of these components is actually customizable. Because when you look at the original concept, it looks like something that is designed for primary health care offices. But each of them is customized to suit your system. And that's part of the reason why I'm doing this. We'll look at each component to see how we can customize it to suit our ICUs. And these are the six components. The first component there is transition policy and guideline development. It starts from 12 years of age to about 14. And the next stage is transition tracking and monitoring from 14 to 18. And we'll have transition readiness, very important. And then the actual transition planning. Then the fifth one is to actually do the transition itself and integrate them into an adult-centered care. And finally, we have to acknowledge that whatever process that starts has to come to an end. And then you can acknowledge the completion of the transition. And then you continue with some ongoing care. Part of the reason I highlighted those three is that if you look carefully, you'll see that they are all happening around the same age, from 14 to 18. And as we go along, you'll see how those three are actually compressed at some point. Now this diagram actually tries to make the point I was trying to say. And that is that if you look at the timeline alone, instead of the six components, it's compressed into four. Because of the three of them happening concurrently around the same age interval. And those are, the first one is policy development, starts around 12 to 14 years of age. Then transition tracking and monitoring, transition readiness, transition planning, they all happen around 14 to 18 years of age. And then the actual transfer happens around 18 to 21 years of age. And then completion from 18 to 20 to 26 years of age. Now let's look into the individual components. The most important is your transition policy and guide. There are two major things you do here. One is to develop the guideline and the policy in your ICU. And the next one is to disseminate it. And in developing your policy and your guideline, you want to get an input from all the stakeholders. You want to talk to the youth themselves if they have the cognitive ability to do that. You want also to bring in the parents or any caregivers they have. And then even the staff in your ICU, you need to include them in developing this policy. The next thing you do is to figure out a way to disseminate this. If it's in the primary healthcare setting, you're advised to put this guideline in areas that are accessible in your practice space. But that is in primary care office. In the ICU, what we suggest, really, is to probably put it in your PQ checklist so that at the end of rounds, somebody talks about this policy for that particular patient. That's what we suggest. And then if you talk about it in your rounds and you put it in your PQ checklist, that's one of the ways for you to do an ongoing reassessment of your policy. And then the primary intensivist for these chronic kids should also pick it up as something that he or she brings up any time they speak to the family. And then during family meetings, it's also advocated that you bring up this policy and keep talking about it. Now when you have your policy and your guideline set, the next thing that you want to do is to establish a criteria for identifying youth that you want to put in a structured healthcare transition. It depends on what you would like to do in your ICU, but these are the suggestions that we're giving. Kids who have chronic illness, chronic complex illness, should be part of the key that you put on structured healthcare transition. Kids that are technology dependent should also form another group that you want to put on structured healthcare transition, or those who are developmentally delayed. Now if you've formed this criteria to identify those that you want to put into a structured healthcare transition, you develop a process to track the receipt of your guideline and the six core elements of transition. There are a couple of ways that you can do that. Again our recommendation is that you might integrate this into your electronic medical record. And patients these days have their patient portal that they could go into. They go there, they see your guideline, they see the six core components, core elements of transition. You could also make it part of your discharge summary package, that as they are leaving the ICU, it's part of what you send them home with. The idea is just to raise awareness and to keep them in check to know that they should be able to follow this process so that the outcome in the long term will be improved. Then another important stage is your healthcare readiness assessment. At this phase, your major task is to identify self-care needs of these patients, and also to assess the level of knowledge they have about how to use healthcare services and resources in the adult world. How do you do this? It is advocated that you do continuous regular transition readiness assessment. Remember what I said about policy development, that you have to involve everybody. You have to involve the child, you have to involve your family. You also have to involve your staff. So the regular transition readiness assessment, you do not have to do it yourself. If everybody in your unit have agreed with this policy, your bedside nurse can do it. Even the social worker can also do it. And what do they actually do? We have validated transition readiness measurement tools. The commonest ones are the transition readiness assessment questionnaire. It's called TRAC. That's the most common one that folks use. And TRAC has about 20 questions in different domains. And the way TRAC works is that it gives you different columns of what is it that the patient is able to do, what is it that they are trying to do, and what is it that they are proficient. So as you move along and you keep doing your frequent transition readiness assessment, you are trying to move them to the column where they are able to be able to not just identify their self-care needs, but be able to do that, and also be able to understand how to use self-care resources in the adult space. Transition planning. This is actually where you put everything together to be able to transfer this kid. So the first thing that you do here is to develop a plan of care. You develop this plan of care, again, in consultation with the youth, the family, or the caregivers. And what you do is that you're reviewing all your readiness assessment findings over time. And you're looking at what is it that the youth wants. What are their goals? What are their priorities? The TRAC has different columns that could tell you, based on your frequent reassessment of transition readiness, that these are things that this patient has been able to do, and these are the things that they have not been able to do. And then you prioritize the ones that they haven't done, that they needed to also do and understand. And with all those, you develop a good medical summary and emergency care plan, if that is needed. And then you discuss with the youth, the family, for optimal time that you need to transition this kid. It's a process. This is, you have about four years to be doing this. And then another thing that is really important in this stage is to help the adolescent, the youth, and the family to begin to identify specialty clinicians that they will be transitioning to. And look into their insurance. Make sure that whoever they are going to accept their insurance, make sure that their insurance are valid and up to date. And then also, if it's possible, connect them with this community support group. Again, this is where your social worker in your unit could also come handy. And finally, at this stage, you're getting consent from the youth and from his or her family and caregiver for you to be able to transfer your medical record. The fifth component is actually where the transfer happens. This happens around the 18th to 21 years of age. This is actually a challenge. But the idea of this talk is to just raise our awareness that we should start doing this in our ICU. So at this point, you have a complete transfer package. And what that is made up of is your final transition readiness assessment. You would have seen where you have moved these kids to based on the track questionnaire. And then you finalize your medical summary and emergency care plan. And review all your legal documents if they are needed. And then prepare a letter of transfer. And actually do the transfer. You know, send out that letter, confirm the receipts. It doesn't matter how you do it, you know, but you could fax this and just keep a receipt just to demonstrate that you've actually transferred the medical record. What is also important at this stage is to confirm the first date of their adult clinician appointment. Very important. It's one of the indicators. Attending their first adult appointment is one of the indicators of a successful healthcare transition. So confirm that date. And then, in consultation with the family, the patient, that patient can now be moved into the adult healthcare system when their condition is stable enough. And finally, the last component of the six core component is transition completion. Like I said, it's a process. It's a process that starts and ends. So at this point, you're trying to acknowledge that you have actually completed this process. And one of the things that you could do is to communicate with the adult physician office or the adult ICU that this kid has been transferred to to confirm that they got everything that they needed from you. And then, in a couple of months after that kid had been in the ICU, you wanna reach out to them. You wanna speak with them and see if they kept their first adult appointment. Like I said, keeping the first adult appointment is a key indicator of a successful healthcare transition. You do not have to do this yourself, actually. You need a clerk to make those calls. And during those calls, you also solicit for feedback from the family and the youth just to help them speak about their experience and how you can begin to also modify your process and get it to something that is optimal. And finally, you could also build an ongoing and collaborative partnership with your adults, primary, and specialty clinicians. The emphasis on this slide, really, is just to say that what we have is the standard six core components, but they could actually be compressed into four. And they're gonna be compressed into four just based on the timeline. The first one that we talked about is transition guideline development that starts from 12 years to 14 years. Then what we group as transition planning that includes tracking, monitoring, readiness, planning, comes around that age. And they all run concurrently from 14 to 18 years of age. And the third one in this instance will be patient integration and transfer and then completion and ongoing care. So those six components could actually be compressed to just four components. I wanted to just highlight this, that this is really, really important. Most of our chronic kids do a lot of interventions. In your medical summary, please make sure that you include all the interventions that they've had. It depends on what major pathology that these kids have. If they're kids that have done a lot of intubation in the OR, those that have had ENT, dental procedures, if they have history of difficulty with, please make sure that it's part of what you put in the medical summary. If they have surgical airways, you wanna put that in. If it's kids that have cardiac issues, if they've had history of pacemakers, make sure that you put that in your medical summary that you're sending out. If they've had stents, if they have stenostomy, just make sure. If you have kids that have neurosurgical procedures, orthopedic procedures, if they have implanted stimulators, ventricular shunts and all that, make sure that they are part of what goes into your medical summary before you send them out. It doesn't matter who that you're sending them to, but whoever receives them, even if it's a cardiac person, a neurosurgical person, all these history of the patient and all the intervention should go into that. What about the resources? Like I said, just to point you guys to a couple of resources. We selected about just four conditions. And again, it depends on what your patient has. And it will depend on what they have. You try as much as possible to look around the resources that are available and what they would need. For kids that have congenital heart diseases, you could point them to the clinic directory. And there's a link, it's highlighted, there's a link there. But in trying to help them to identify an adult congenital heart disease specialist, there are a couple of considerations you wanna make. You wanna look at what the kid currently needs. Does the kid need surveillance diagnostics? Do they need drug monitoring, electrophysiological issues? Because if you know what their ongoing needs are, that would help you narrow down the adult congenital heart disease specialist that you're sending the kids to. And also consider their geographical location so that you don't send them where they might not be able to go. You really want, at the end of the day, you've transferred them, but you want them to keep their appointments. The other condition that we considered here too is transplant. It was actually shocking to me when I was putting this together to realize that the highest risk of complications among transplant patient happens around the time of transition. There is a paper from UK that was published in Lancet. The link is there. And it shows that 35% of patients transitioning to adult care lost a successful functioning kidney within 36 weeks. One in three, or even more than one in three. A kidney that is transplanted functioning, but because of non-structured, well-executed healthcare transition, those, they lose, were transplanted. I'm saying this just to kind of arouse your interest to begin to look at this area of social healthcare. The American Society of Transplantation helps and they provide a pediatric transition portal webpage with resources on transfer of care. This is for patients and families. You know, you could also point them to this resource. The other condition we talked about here is cystic fibrosis. Remember what I said about the group of patients in our ICU living longer because of improved healthcare services and improved healthcare technology. We are beginning to see that we have higher number of adults now living with cystic fibrosis than number of pediatric patients with cystic fibrosis. Well, that basically means that they are living. And if they are living, they really do need structured healthcare transition to continue to optimize their patient outcomes. Considerations that you also have to talk about with these kids is, you know, their preservation of their pulmonary function, their diabetic management, their maintenance therapy for pulmonary GI bone and joint issues. You could point them to the Cystic Fibrosis Foundation. Tons of resources that will help them there. What about patients with intellectual and developmental disability? Very wide range of patients. And because they are wide range, this is one of the areas that we really, really do advocate that you start advanced preparation, you know, and give them a good, well-structured transition plan that will benefit them eventually. There are tons of resources, tons, tons. Co-transition from the National Alliance to Advance Adolescent Health is one of them. And then Welcome Moving to Adult Healthcare from Center for Transition to Adult Healthcare for Youth and with Disabilities, another resource. What about the challenges? As good as I'm trying to make healthcare transition look, there's tons of challenges why this has not been done and done well. One is loss and lapse in care. Sometimes as these kids advance in age, there might be a chance that they may lose their insurance coverage. But the Affordable Act of 2010, at least in the United States, have allowed these kids to be in their parents' insurance till they are 26. So part of this challenge is being ameliorated to a certain degree. And mental health issue, we all know that in chronic illnesses, any kid that has any sort of mental health issue needs to be addressed. If you don't, even if you've laid down a beautiful, well-structured healthcare transition and their mental health issue is not addressed, it's still a big risk factor for poor compliance as you transition them. What about occupational and lifestyle concerns? So these kids, you're helping them to transition in their healthcare services. But in their personal daily life, they're also transitioning to other things. Some of these kids are going to colleges. Some of these kids are going to work. Some of them are getting into relationships. Some of them are looking into sports. So these are issues that you have to discuss with them. If you have a set of patients who are getting into any sort of job, just make sure, have that discussion with them to make sure that wherever they are going is a place that will be able to allow them to come in with emergency medication, make sure that they can bring in their equipment, make sure that there will be a set time for them to do their medical therapies. And those that are considering family planning and raising a family, again, the transition happens in a composite way. If they are considering making families, just look into their medications to avoid teratogenic agents. And if they must be on this, then talk to them about family planning as well. And what about alcohol use? These are real things. Alcohol use, driving, pet ownerships, sports participation, dating, you need to really have those discussions with them. What about legal competence and medical decision making? So one of the other indicators for a successful healthcare transition is to be able to get kids, adolescents, to a point where they are comfortable with autonomy in making clinical and medical decisions. That's encouraged. That's part of what you wanna do. However, you also need to talk to them about a proxy just in case at any particular point in their life, they don't have the capacity to make their own medical decision. This last challenge is part of the ones that I really, really do want to emphasize. There's provider, and by this, I mean like the adult provider reluctance to accept adult patient with childhood onset conditions, mostly in primary healthcare setting. It's a concern, but we know that part of the reason is that they are not comfortable and they don't have the competence to treat this population. In conclusion, I tried to emphasize that kids with chronic medical conditions are increasing in number, and they will continue to increase for the reasons that we have mentioned earlier. And because that number is increasing, there is also increased need for us to have structured, formal healthcare transition services. And we're advocating for research to look into all the six components of healthcare transition and see what impact they have on the quality of life of these patients. And finally, for program directors, those that are involved with ACGME curriculum development, we're advocating that ACGME curriculum should include healthcare transition training. Thank you guys so much, and I will take questions now. Thank you.

pediatric to adult care

healthcare transition

chronic conditions

transition planning

adolescent care

medical curriculum