Pediatric-to-Adult Transitions of Care

Transitions between pediatric and adult healthcare models can be one of the most trying and health-destabilizing things a young person and their caregivers experience. Healthcare professionals on both the sending and receiving ends of this transition need training in how to facilitate successful transitions. Resources like medical society recommendations and GotTransition.org can help, but there are many challenges to successful transition of which healthcare teams must be aware in order to assist their patients through the process.

Learning Objectives:

1. Define Healthcare Transitions. 
2. Describe two barriers that patients and families face in transitioning to an adult-centered model of care.
3. Describe two barriers that healthcare professionals face in comprehensive transition. 
4. Identify specific challenges that patients with complex medical needs face during the transition process. 

Credits:
Guest: Dr. Shirin Alonzo  
Co-hosts/Producers: Dr. Pooja Jaeel, Dr. Maggie Kozman
Executive Producer: Dr. Tammy Lin 
Co-Executive Producers: Dr. Pooja Jaeel, Dr. Tiffany Leung
Senior Producers: Dr. Maggie Kozman, Dr. DJ Gaines
Editor/Assistant Producer: Joanna Jain, Clara Baek
Production Assistants: Alexandra Babakanian, Leyna Nguyen
Website/Art Design: Ann Truong
Music: Chris Dingman

Connect with us on Instagram at @thedayshift.pod and via email at thedayshifthealthcare@gmail.com

Transcript

[0:00] Dr. Pooja Jaeel: Welcome to The DEI Shift, a podcast focusing on shifting the way we think and talk about diversity, equity, and inclusion in the medical field. I’m Dr. Pooja Jaeel, an Internal Medicine and Pediatrics practicing physician and one of the co-executive producers of the DEI Shift. And my co-host today is…

Dr. Maggie Kozman: Dr. Maggie Kozman, also an Internal Medicine and Pediatrics physician who’s a hospitalist and a senior producer of The DEI Shift podcast. Today, we’re especially excited as Med-Peds physicians who trained together in residency to bring you an episode on pediatric to adult transitions of care. This is a topic that we each separately gave a lecture on to our medicine or meds-peds colleagues during our fourth and final year of residency, because it’s such a key topic for Med-Peds physicians. But also because we realized that there was a curricular gap in this area, especially when it came to training adult physicians how to prepare for receiving youth transitioning from pediatric care to their adult practice.

Dr. Jaeel: Yup. And transitions between pediatric and adult healthcare can be one of the most trying, disorienting, and health destabilizing things a young person and their caregivers experience. And while there are some tried and true strategies of how to transient well, they’re not really widely known or implemented for a variety of reasons.

[1:22] Dr. Jaeel: Speaking with us today about this topic is Dr. Shirin Alonzo. Dr. Alonzo is a Med-Peds trained physician with a unique neurodevelopmental specialty who currently wears multiple hats and delivers primary care for people of all ages in multiple settings. She has a focus on special needs and complex care pediatric conditions. She has a Master’s in Public Health with a focus on family and community health. When she isn’t practicing medicine, she enjoys surfing, oil painting, playing basketball, and spending time with her fur babies Buffi and Snowie.

Dr. Shirin Alonzo: Thank you guys so much for having me. I’m very excited and it’s an honor to be here and share my passion with you and all of our listeners.

Dr. Kozman: Thank you so much for being here. We’re so excited to learn from you and talk about this topic with you. Would it be okay with you if we all refer to one another using our first names during this conversation?

Dr. Alonzo: Yes, that would be fine. Just so you know, pronouncing my name is Shirin, or “Sherin,” if that’s more comfortable for you, I know it’s a hard one to pronounce.

Dr. Kozman: Perfect, thank you so much!

[2:31] Dr. Kozman: Well, before we dive into pediatric-to-adult transitions, Shirin, we like to ask each of our guests on The DEI Shift to share something with our listeners about themselves. And this can be something like a hobby, a favorite food, a meaningful experience that helps us get to know you and your background a little bit better and flex our cultural humility muscles. And we call this our “Step in Your Shoes” segment. So, what would you like to share with us today?

Dr. Alonzo: Yeah, that’s a really wonderful question. And I’m glad you guys are incorporating that into our segment today. Um, so I grew up culturally both with Persian culture and Latino culture. So I am half Iranian and half Venezuelan. And right now is actually Persian New Year time so it’s something very special to millions of people around the world and it aligns with the spring solstice. So for us, it’s a new year, so happy new year and it lasts a couple of weeks. Uh, similar to different cultures, we do a different kind of activity each day or have a different food each day. So the night before new year’s, we’ll usually have fish and rice with certain herbs and that’s to mean, you know, rebirth and a new meaning. So, there’s a lot of meaning and metaphors and symbolism within the new year. So that’s something we’re doing right now. And a part of the new year is visiting our elders so anyone older that you. You kind of take turns and go around and you receive something which is usually like money and either like a some kind of ancient book, whether it’s a religious book, or a poem book, um you’ll get money from it as a good faith and a good luck for the upcoming year. So that’s something that we’re celebrating right now. So, for everybody it’s a new season or a new year.

Dr. Jaeel: That’s so beautiful, thanks for sharing. How do you say, “happy new year”?

Dr. Alonzo: There are a couple of different ways, but the easiest would be “sala nomo bora.”

[5:01] Dr. Jaeel: Alright, so let’s dive into our discussion today because there is a lot to cover, uh, Shirin, we’d like to start off with some definitions. So, can you please tell us how transitions of care is defined? What is it defined as, and just more details about the special needs and complex patients that you work with?

Dr. Alonzo: Yeah, there’s a lot of different definitions out there. So we’ll focus on a couple just to streamline the conversation today. When we talk about transitions of care, that can be applied to a lot of different things, but our focus today is really the transition of care from the pediatric health care system to the adult health care system.

The Society of Adolescent Medicine, they define transition for adolescents with medically fragile conditions as a purposeful, planned movement from child-centered to adult-oriented healthcare systems with the optimal goal of providing healthcare that is uninterrupted, coordinated, developmentally appropriate, psychologically sound and comprehensive.

Each of these keywords is actually critical, but the other thing that's really confusing is how do we define these patients, right? How do we define “difficult”? What is a patient with a special need? What is a patient with a complex care issue? You know, how do we choose and who defines it and what is meant by it? So, for example, the Federal Maternal and Child Health Bureau, they actually have a specific term for this population and they’re called CYSHN, so Child and Youth with Special Healthcare Needs. And they’re defined essentially by, it’s a very kind of general definition, so these children are at increased risk or already have a chronic physical, developmental, behavioral, or emotional condition. And they also have to require health and health-related services of a typical amount beyond what general children without these conditions need. So that’s also another very broad definition, right?

And then if we look at well, how do people in medicine define medically fragile? Like when we want to give them home health services or give services in the clinic, what is a medically fragile person, right? Well, we think of it in practice as you know, a non-ambulatory patient that has a medical condition that warrants 24-hour nursing care. It’s somebody that you can’t do things on their own, but not just can’t move right. They need help having certain expertise and experience whether from a home health nurse or physician, etc. That’s kind of the agreed upon definition of medically fragile. So I know our podcast today is going to be about how we do that for these complicated pediatric patients, right? Because that’s the definition of a transition of care. That’s the goal of a transition of care. Is this even possible? If it’s possible, what needs to be done and what’s happening today?

Dr. Kozman: Absolutely. Yeah, I mean you bring up such great points and that definition itself, each one of those adjectives or descriptors before, the end result of equitable care, is an opportunity for inequity, right? And for difficulty in transition and important medical information to fall through the cracks during a transition period.

[11:05] Dr. Kozman: So, now that we are more familiar with some of those terms and the process and the patient populations you addressed, can you tell us why this process can be so challenging, especially for medically fragile patients?

Dr. Alonzo: Yes, there are a lot of answers to the why, but I’m going to really focus on four different things. So, the first thing that I already alluded to is that there’s really no single definition. And if we don't have a single definition, then we're going to have a lot harder time defining what the goals are, defining how change is made, because we always need metrics, which are based on definitions in order to assess if we are making change. Right? Typically data and evidence is what drives decisions and data and evidence is collected based on definitions and metrics. So if we don't have a specific definition that we can all agree upon, then how are we going to make change when we cannot even show how important it is to make change for this population?

The simplest thing is why is this complex is we can't even agree on definitions that make sense clinically and financially. There are a few clinics for medically fragile children who transitioned to adulthood, um, in this country. And you can Google this, each clinic uses a different definition, different qualification eligibility to be in that clinic. For example, one of the clinics that I work at, our patients typically need to have at least one technology dependence and two to three minimum of two to three different chronic diseases affecting different systems. But there's other clinics for specific chronic illnesses, like cerebral palsy or Down syndrome. If we're going to create a structure for them, what definition do you use?

The second reason is the patients themselves. They're so complex. These patients require a lot of different, not just medical needs in terms of clinical needs, but also social needs, financial needs. These patients are complicated. They could live at home with biological parents, but a lot of these patients also end up in the foster system because they are at higher risk for abuse. Their social situation is so much more complex. These patients usually are in wheelchairs or they have a G-tube or feeding pump. The more severe will have a trach. Families initially need a lot of nursing care. But what's so fantastic is these parents end up becoming like mini doctors. They really know how to take care of their child so much better than anybody else can. Anytime the parent tells me "No, Dr. Alonzo something is wrong," I say, "I believe you," because you know the process.

The parents have to coordinate multiple specialties, multiple DME orders (durable medical equipment), case managers, and SDG&E medical allowances. As physicians, we think we don't need to know this stuff because the focus is pathology and physiology. Well, that part of being a complex care physician is the easy part. Managing the G-tube or modifying feeds is minimal time. The part that's hard is everything else that doctors aren't trained for.

The last part is that this is a really complicated financial situation. The healthcare resources that these patients qualify for are significantly different when they're a child versus when they're an adult. And remember, this is just by date of birth. Insurance companies and programs decide that cutoff. Now these age definitions may have made sense 50 years ago, but they do not make sense today. Medically fragile children are living much longer. So why is the system not adjusting? In California, for example, about half of our kids are Medi-Cal eligible. The specific Medi-Cal program for these patients, called CCS (California Children's Services), cut off is 21. Before they turn 21, it is a nightmare. What adult provider is going to be okay treating you because my clinic doesn't accept this other insurance? What about these diapers? Why are we in chaos?

Dr. Jaeel: And it's funny because the definition you talked about before, the terms were like purposeful and planned. So, this definition seems very ideal for the chaos that runs on the ground.

Dr. Kozman: It is not true to experience, that's for sure.

[20:05] Dr. Jaeel: It's so many. And I mean, I guess the next natural question is, okay, where do we start? I think one of the things we were taught in residency is the six core elements of transition highlighted in the 2018 clinical report co-sponsored by the ACP, the AFP, and the AAP. For those who haven't seen this model, it's an approach that identifies the basic components of a successful transition and proposes a series of steps. In your experience, is this actually happening on the ground?

Dr. Alonzo: Well, I think you and all our listeners probably know the answer to that question by now. You know, what's so great is over the last 10 years, the first step is always awareness and that's kind of where we're at in our country. We're not quite there at the implementation phase. A big part of that is financial structure. There is no reimbursement based on how well you transition. Because residencies are funded by the government, the government tells you, "You need to know how to take care of people over 65." Great. So, why don't we convince the government to fund us for this transitional population?

[21:28] Dr. Alonzo: So what can you do today? There's a lot of things you can do personally on the individual level that will affect systemic change later. First, assess your current healthcare system, especially your primary care healthcare system, because these patients need a medical home. Understanding what health insurance your patient qualifies for is the crux of understanding how to advocate for your patient.

I look at myself not as a doctor, but as an advocate with medical expertise. I learn so much from my patients and their parents. I learn about programs for respite care, and I write all these down. Then, I teach this information to my colleagues, nurses, and medical assistants. Next, network with other people that care about the same thing you do. Figure out in your region who are the sub-specialists on the adult side that can manage care for cerebral palsy kids. Have a conversation. You just need a little list of 10 doctors in your county. What if we created a website or an app that connects the pediatric world to the adult world for medically fragile populations? I'm copyrighting this idea.

Dr. Jaeel: It was like, I'll hop on that! It's so useful.

[25:26] Dr. Alonzo: The other thing is really to inspire. People get afraid of taking care of medically fragile people because they don't have the training. We need to mandate that everybody in this country has one month of complex care training. We can do that. Who is going to light the match to start the fire?

Dr. Kozman: My Med-Peds heart is really happy right now. Having this multidisciplinary and collaborative approach—tapping into our nurse practitioners, physician assistants, physical and occupational therapists, social workers—is very powerful to help get patients the things that they need mobilized for them and their caregivers.

[28:24] Dr. Alonzo: It can be really scary to learn about insurance, but you don't have to be an expert. When I was a fellow, I messaged the CMOs of four different hospitals directly. Every single one responded. Don't be intimidated. You learn it by experience, and even more, you learn it by connection.

Dr. Jaeel: I'm one of those, I'll be very honest. The financial aspects of the healthcare system intimidate me a lot. But I am super inspired now.

Dr. Kozman: For our listeners in other states and nations: Medi-Cal is Medicaid in California. Medicare is for those 65 and older. CCS is California Children's Services. Maybe your system does this better, and we would love to hear from you.

[31:20] Dr. Alonzo: Change starts with you. It doesn't start with a massive corporation. It literally starts with you and your patient. Advocacy comes from parental groups. Join forces.

[32:18] Dr. Kozman: Thank you so much for starting off our discussion today, Shirin.

Dr. Jaeel: We'd like to invite our listeners to join this discussion online and share your stories at thedeishift@gmail.com or on social media with the handle @thedeishift.

Dr. Kozman: We'll also have a transcript of this conversation along with show notes. Thank you again, Shirin.

Dr. Alonzo: Thank you guys. And happy Persian New Year and happy new beginnings!

[33:24] Disclaimer: The DEI Shift podcast and its guests provide general information and entertainment, but not medical advice. Before making any changes to your medical treatment or execution of your treatment plan, please consult with your doctor or personal medical team. Reference to any specific product or entity does not constitute an endorsement or recommendation by The DEI Shift. The views expressed by guests are their own, and their appearance on the podcast does not imply an endorsement of them or any entity they represent. Views and opinions expressed by The DEI Shift team are those of each individual, and do not necessarily reflect the views or opinions of The DEI Shift team and its guests, employers, sponsors, or organizations we are affiliated with.