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Nidhy P. Varghese, MD - phaware® interview 413

May 2, 2023

Nidhy P. Varghese, MD is a pediatric pulmonologist and the Medical Director of the pediatric pulmonary hypertension program from Texas Children's Hospital.

In this episode, Dr. Varghese discusses transitioning from a pediatric PH care team to an adult medical care team. 

Hi, my name is Nidhy Varghese. I am a physician at Texas Children's Hospital. I'm a pediatric pulmonologist, and I am the medical director of the Texas Children's Hospital Pulmonary Hypertension Center in Houston, Texas. 

Today, I'd like to talk to you about transition. This is a topic that's extremely important because of my pediatric background, and because I really care for my patients and I want to make sure that all of my patients who I think of as my children are well cared for when they leave the pediatric space and move to adult medicine. 

First, I want to talk about what transition is. Transition is moving from one phase of life to another phase of life. Now, this can be transition that's outpatient to inpatient or inpatient to outpatient. It can also be transition from one medication to another. But what I'm going to be focusing on today is transition from one provider or practice to another.

Typically when we talk about transition, specifically in the pediatric arena, it is talking about transitioning from a pediatric care team to an adult medicine care team. That type of transition is something that's extremely important to talk about because it is a vulnerable time period. The usual support system that a child, his parent, or her family may be used - that support system may not be readily available. So your team is different. You're not sure who to talk to. There is a risk for lack of scheduled medical care. You may need medications and refills and don't know who to call. The transfer records may be incomplete, so the people you're transitioning to may not actually know anything about you. And there's a loss of experiential history. What that means is that as a pediatric physician, I take care of my kids often from the time they're born until the time that they graduate to go to the adult center.

There are many opportunities for me to make memories with these families. I work with them in the hospital with their first cardiac catheterization. I'm there when they have their first pump change. I'm here when they transition from middle school to high school, through puberty, et cetera. Those are big milestones, and your pediatric team is there to have that history with you. Now you're moving to somebody who doesn't have that history with you and doesn't know you. So transition is a very important theme in pediatrics. There are so many chronic diseases like cystic fibrosis, for example, in which there is a firmly established transition model. But pulmonary hypertension is not one that has that. 

This disease, I think partly, it's just not been thought of for transition because sometimes kids didn't need to transition because they weren't living long enough to transition. But happily, this is a problem that we now face, is that kids are now living long enough to transition to adult care. They have unique issues and unique causes that are different from the average patient who shows up as an adult with pulmonary hypertension. So these are kids who've been dealing with pulmonary hypertension their whole life, as opposed to the adult who walks in and now it's diagnosed with pulmonary hypertension. 

Some things that I think are challenging for transition to really occur smoothly is that one, there's a lack of physicians, providers and offices who are knowledgeable about pulmonary hypertension. It's not like you grow up with asthma and it's time for you to move from your pediatric physician to an adult physician, and you can just open up your insurance directory and you can look up an asthma doctor. PH doctors are not that common, so the lack of physicians, providers, and offices who are knowledgeable about pose a real challenge for transition.

It may be hard for you to find someone in your area who takes your insurance. For example, you may have a Medicaid plan that is specific to a children's hospital. Texas Children's Hospital, where I work, has a specific Medicaid managed plan that's for Texas Children's. Well, the adult hospital may not take that insurance, and you may actually live somewhere else around a different city or a different center with a different insurance that is not accepted in your area either. Speaking on that same theme of insurance, if you're changing from a parent or a caregiver insurance to a standard Medicaid, there may actually be a lapse in coverage, and that can affect your medication access, which can then ultimately affect your clinical stability. 

Going back to that theme about trust in your new office, it takes a while to build trust. To go from a PH team in your pediatric center where they know you to now go to an adult center, that can be very scary because there's not this sense that they know me like you know me. So that's a hard thing to do. 

Another group that's really effective with transition that many people don't think about is actually the parent or the caregiver. Parents are used to taking care of their children, and transitions are always hard. But when you have a child with a chronic illness, you're used to "having to do everything for them." Now suddenly, you're cut out of the picture because your child has been defined by the state as an adult because they're over 18. Now suddenly, you're waiting in the waiting room while your child goes in with a doctor, and you're thinking, wait a minute. He doesn't know what to say. So that role of the parent and caregiver in transition is unclear, and sometimes can be really unsettling for the parent, and can be associated with caregiver distress in the time of transition.

All of these themes, the risks for transition to not occur properly, the fact that there is no policy or process in place for many children to transition from pediatric PH care to adult PH care, that patients and families are not ready for this, they're not discussing transition, they're unprepared for transition, parents are unprepared slash unwilling to transition now with a healthcare team that's not used to taking care of patients who are informed on pulmonary hypertension and their chronic disease, who have a lot of questions and are used to a pediatric approach to explaining things and talking at different levels, to now coming into an adult care center where there may not be the same amount of time, to sit with a patient where they may not have the same approach or the style of talking to patients and their families and engaging in family-centered discussions, that can also lead to an unsettling transition.

Then finally, the adult care providers may not be trained in how to manage patients during moments of transition, especially when they don't know the patient. Sometimes there's not a formal handoff. There may be insurance barriers that the adult care physician is not used to dealing with, and they may be unprepared to navigate this change in relationship between the caregiver and the parent, and now the patient who is an adult. So all of these are significant risk factors for unsuccessful transition. 

So how do you do it? How do you transition in a way that is successful, and in a way that all parties who are involved feel like this has been done well, and most importantly, that the PH patient does not suffer? The important thing is that transition readiness is something that occurs. It's a process. It's not a one-time visit. It is a process that begins in early adolescence when the patient is ready to talk about owning their own care. Usually this is somewhere around the age of 12, and that's when we can start using the transition tools that we have through various websites, through various organizations that have transition tools to help us assess readiness for transition. This looks at education, it looks at insurance, it looks at geographical. It looks at all the different barriers that can affect transition, but it looks at them early so that we're not having to then scramble at the end when it's time to transition. 

It's important to empower the child to make them understand that this is a process for them and it's driven by them. The child, the patient gets to decide, what's my rate of transition? Some kids pick on to transition really quickly. They know their meds, they know their pharmacies, they know who to call. They're already working on MyChart messages through Epic or through their patient portal. Then there are some who it just takes longer, and that's okay. It's a personal journey. It's a personal process. 

The way that we, as pediatricians, can help is to empower the child in clinic, increasingly rely on the child for the history, include the child in discussion of the plan so that the child really feels like they have an ownership on the disease process and on the disease itself. You want to encourage the child as they get older to communicate directly with the PH office. If you have questions, you can call us. And just know that if you call us with a question, we're going to make sure that you and your parent know what's going on. If you want to download your patient portal onto your smartphone and message us, you can do that. But realize that you're going to message us. We're going to make sure that your parents know what's going on too. It's not to cut the parent out, but it's to help the parent also see their child in a different light and kind of slowly hand off that baton for communication.

Then don't cut out the parent. The parent and the caregiver, they have been taking care of this child for their whole life, and they are clearly a vested member in this team. Involve the parent in the transition tool. The parent is a transition care partner. Encourage the parent to slowly start working on involving the child in decision making and calling for med refills and filling their pillbox, et cetera. When the child is still at home with the parent is a great time for the parent to really assess how ready the child is. Then talk about a bunch of the different topics. Don't shy away from topics. Remember that even though these are kids, and as pediatricians, sometimes it's hard for us to see that our patients are growing up, and it's hard for us to accept that our patients are now young adults, realize that there are a lot of mature topics that need to be addressed in the pediatric sphere also. Address the topics. I always tell my patients, "We need to talk about the sex, drugs, and rock and roll." Talk about all of that while your patient is still with you in the pediatric sector so they're used to talking about that, they know that these are themes that are okay to talk about, and they get comfortable talking about that with their care team, so that when they're on the adult side without their usual network, they can still continue to talk about that with their team. 

You've done all these things. When is it time to transition? So it was time to transition when the patient knows their disease, has a basic understanding of how it affects their body, can recall their medication. I tell my patients, "You don't have to have this memorized like you're attached to your smartphone. Use it. Take pictures of your medications. Line them up on your kitchen counter, take a picture of them. Take a picture of the boxes that come in the mail so you know which pharmacy gives you what. It's okay to kind of have your cheat notes with you. That's all right. Understand the mechanisms of the medication actions and know which pharmacy is to call and how to get in touch with them." 

The patient should be able to name their insurance and be familiar with the plan covered, so you know which hospital do I go to that's in my network. The patient should know how to contact their medical team and know when to contact their medical team. 

And finally, and this is a really important one, is make sure your patient knows how to recognize emergency situations hand, how to approach them. When your transitioning, if you have a problem, do you know who to call? Do you know where to go? Do you know how to identify this is an emergency versus this is a message in my patient portal? So those are very important topics. 

Then we, as the pediatric team, it's really important for us to help the families and the patients choose their adult care partner. For the best outcome, your pediatric team should be involved in this process. It should not be that the pediatric care team says, "Hey, guess what? Today's your last visit with us. All the best. Let's take a picture. Goodbye." It should not be like that. It should be a process that has been coming so that when it does come, everybody knows who is now going to be taking care of you, who the patient is going to be calling when it's time to go to the adult side, that the pediatric team has verified all the appropriate records have been given to the adult team, and that there's been a proper handoff.

When you're choosing an adult care physician, an adult care hospital to go to, or clinic, you need to be able to make sure that the adult team can check off the following boxes. It's not just that you found a pulmonologist or a cardiologist whose office is close to you or is on your insurance roster. You want to make sure of the following. The adult care team should be able to prescribe and manage all available PH therapies. They should have a contract with your insurance or be familiar with it, have admitting privileges in a hospital that can care for pulmonary hypertension related complications, have an on-call system to revive 24/7 care to you, so that if you have a problem at three o'clock in the morning, you're not stuck waiting until an office opens up, and that they have a medical staff who you can reach, they are willing to listen to and they respect your transition process. Those are very important roles that each adult care practice that can take care of PH should be able to check off without a problem. 

One other piece that I didn't mention earlier, but I have to note now is that if you have other diseases that complicate your pulmonary hypertension, for example, lupus or congenital heart disease, you want to make sure that the team that you're going to can take care of that type of pulmonary hypertension and that they have subspecialists who they can consult for help. 

To ensure success, once you know where you want to go and your pediatric team has been involved in helping you make that decision, there needs to be a sign out between your pediatric team and your adult team. This should include your primary pediatric PH doctor and the person who's going to be picking you up on the adult side. Ideally, when we do this here at Texas Children's, it includes the physician, the nurse practitioner, the nurse coordinator, research team, social workers, and we have those on both sides. We really try to make sure that all the different aspects of your care are being addressed from top to bottom and that we are signing that out and handing it off to somebody who can give you the same kind of 360 care when you go. 

Sometimes what we like to do, if it's possible, and it's not always possible, but if you are transitioning to a team that's in the same hospital system where you are now, sometimes what is really nice is that the adult doctors can come over to the pediatric side. Then you can do a sign out right there in the clinic so everybody can meet the new team. Another neat thing you can do is a telemedicine visit or a video visit with your new team and get to meet them, and then come back to your pediatric team and just talk about, how did that transition visit go? Sometimes it's nice to kind of have a practice visit.

Another thing to ensure success, stay on top of refills. Make sure you get plenty of refills from your pediatric team to tide you over in case there's any kind of an issue with your adult medicine appointment. Request that the new team sends you the office visit documentation. That's to the pediatric team, so we kind of can close that loop and make sure that our patient actually made it there. Then one thing that we've done a couple of times, and I think I mentioned that just now, is that I'll do a practice visit for my patients. So I'll send them to the adult side, and then I'll offer them, "Hey, you can have another visit with me after you see the adult side. So we can just talk about, debrief on that visit, talk on that visit and say, "What went well? What didn't go well? How can you approach this?" and really just kind of validate your readiness to transition, and make sure that all the little things, all the I's were dotted, the T's were crossed, and that everything is really in place for a successful transition.

One thing that I think is extremely important to tell pediatric physicians, but then also on the adult side, is that partnership is a two-way street. So this partnership within medical care is a two-way street. Pediatricians should not be dumping their patients onto a new medical care team. That's not fair to the new care team, and it's really not fair to your patient who's had this trust in you for so many years. Please make sure you tie up any loose ends before the child transitions to the adult care team. If you, as a pediatric PH physician, you see that the echo is worsening and you're going to get a catheterization and go up on medications, but oh, the child is graduating high school, that's not the time to transition. Just because the child is graduating high school does not mean that this is the time to go when medically, the child is unstable. Be thoughtful in the timing of your transition. Don't transition in the middle of clinical instability, when there's a new medication, when there's social stress, for example.

Make sure that the timing of your transition is agreed upon by you, by the family, by the patient, also by the medical care team that's going to receive the patient. Then remember for the pediatricians, that until the child is established with the adult care team, and by established, I mean they've had a visit and the adult care team says, "Okay, reprogram your phone. I am now your doctor," the pediatric team is still the responsible medical team. Sometimes it may take a couple of visits for the patient to be firmly established on the adult care side. It's important that the pediatricians and the pediatric care teams continue to stay on top of those patients. 

After transition, it's really great to keep building the relationship. If you had a great transition as a pediatric care team with an adult care team, and you're like, "That went really well, I want to continue to grow this relationship with this adult care center because I will preferentially try to refer other patients to you because this was such a good transition process," promote each other, build a relationship, promote relationships through joint research, through sharing interesting cases. 

Remember that as pediatricians, we have great experience to offer our internal medicine colleagues. So we can teach about a lot of themes that are really common in pediatrics, such as subcutaneous Remodulin, approaching someone with developmental delays, or persistent pediatric conditions, such as bronchopulmonary dysplasia or adult congenital heart disease. Then internal medicine physicians, on the other hand, have great experience to offer to the pediatricians, such as research trials, which may enroll as young as 16 years of age, or experience with newer medications that haven't quite made it down to pediatric age group.

I've talked a lot about transition. I realized that as I was speaking, I was going kind of back and forth between you, the patient, you, the caregiver, you, the parent, and you, the pediatric provider. I think that's been really confusing, but I hope that what you, dear reader, take away from this is that transition is an increasingly important part of this pediatric PH care plan, and it's something that we, as pediatricians, really need to focus on, and adult care physicians need to realize that it is happening and that it really takes good communication for this to be successful. There's a lot of conversations that have to happen between all the key stakeholders. To review, those key stakeholders are the pediatric PH care team, the adult care team, and the family or the caregiver, and most importantly, the patient. This is a team process, right? Because it takes a lot of work to transition successfully. And that's why it takes a team, because we have to anticipate every aspect of transition when we do that. 

I'm Dr. Nidhy Varghese, and I'm aware that my patients are aware.

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