Summary
Transitioning hemophilia care from pediatric to adult care sounds simple enough. At home, though, it can be complicated鈥攈abits run deep, and for parents of children with hemophilia, the line between protection and independence isn鈥檛 always clear. When does keeping someone safe become holding them back? And how do you help a family figure out when it鈥檚 time to step back? In this episode, we鈥檒l explore how hemophilia treatment centers put transition care into practice鈥攏ot just on paper, but in real cases鈥攖o help teens and young adults with bleeding disorders navigate taking ownership of their treatment and their first steps toward independence.
Dr. Kyle Davis
Pediatric Hematologist at Innovative Hematology
Dr. Kyle Davis, Pediatric Hematologist at Innovative Hematology in Indianapolis, IN. He has particular interest in the treatment of bleeding and clotting disorders in pediatric patients. Dr. Davis went into the field of medicine due to his own experiences with severe Hemophilia A. He has regular opportunities to interact with families like his own as they encounter a new diagnosis of a bleeding disorder and navigate the world with this new diagnosis. His primary goals with his patients are to help them live as normal lives as possible, while preventing complications from their bleeding disorder. His two favorite parts of his job are the longitudinal relationships needed to care for his patients with chronic disease and the opportunity to teach parents about how best to care for their kids.
Brittany Savage
Nurse Practitioner at Innovative Hematology
Transcript
DDx SEASON 12, EPISODE 3
The Hardest Shift: From Pediatric to Adult Hemophilia Care
Dr. Raj Bhardwaj: This season of DDx is produced in partnership with and sponsored by Sanofi.
Some details of this case have been changed.
HOOK
Dr. Bhardwaj: It鈥檚 a rainy Tuesday afternoon, in the front hallway of a family home.
A teenage boy stands quietly, his backpack at his feet, while his father hovers nearby with a cooler full of medical supplies.
Brittany Savage, a nurse practitioner, has just arrived to talk with them about the boy’s hemophilia.
But what stands out isn鈥檛 the medication or the logistics鈥攊t鈥檚 the subtle tension between a parent who鈥檚 always taken the lead with treatment and a teenager who鈥檚 unsure about stepping up.
In clinics, 鈥渢ransitioning care鈥� sounds simple enough.
At home, though, it鈥檚 complicated鈥攈abits run deep, and the line between protection and independence isn鈥檛 always clear.
When does keeping someone safe become holding them back?
And how do you help a family figure out when it鈥檚 time to step back?
Brittany Savage: It can be really difficult for parents of kids with hemophilia to know when to step in and when to step back because as a parent, one of your primary roles is to keep your kids safe, right? But also, you want to keep your kids safe when they’re a young adult.
SHOW INTRO
Dr. Bhardwaj: This is DDx, a podcast from 乐播传媒 about how doctors think.
I’m Dr. Raj Bhardwaj.
If you work in healthcare, you鈥檝e felt it鈥攖hat moment when communication breaks down.
Maybe a physical therapist catches something, but it doesn鈥檛 make it back to the physician.
Or a nurse sees a red flag, but the rest of the team doesn鈥檛 hear about it.
Those gaps?
They can get in the way of giving patients the care they deserve.
This season on DDx, we鈥檙e going inside hemophilia treatment centers鈥攑laces where teamwork isn鈥檛 optional. It鈥檚 what holds everything together.
You鈥檒l hear stories from the people who do this work every day鈥攈ow collaboration really works, what it looks like in real time, and what happens when it breaks down.
These aren鈥檛 hypotheticals.
These are real patients, real decisions鈥攁nd real consequences.
In this episode, you鈥檒l meet Brittany Savage.
She鈥檚 a nurse practitioner at Innovative Hematology in Indianapolis.
She helps teens and young adults with bleeding disorders learn to manage their treatment and take those first steps toward independence.
You鈥檒l also hear from Dr. Kyle Davis, a pediatric hematologist.
He works alongside Brittany at the same center, caring for kids and families from all over Indiana.
Together, they鈥檒l talk about what happens when a teenager with hemophilia stands at the edge of adulthood.
How do you help a young person start taking control of their care?
How do you help parents know when to let go?
And what does good transition care really look like鈥攏ot just on paper, but in practice?
CHAPTER 1: THE PATIENT
Dr. Bhardwaj: We鈥檒l call our patient Joe.
He鈥檚 16, diagnosed with hemophilia at birth, with no family history to guide the way.
For as long as he can remember, his dad has handled every clinic visit, every infusion鈥攅very part of his care.
Joe has never had to do it alone.
The team at his hemophilia treatment center knows the challenges.
Joint bleeds, missed infusions, the risk of future damage.
On paper, Joe has a plan. But in real life, that plan depends on his father.
When nurse practitioner Brittany Savage first meets Joe, she sees both the potential and the challenge.
Savage: The father was still really involved in Joe’s care, but specifically infusions. At one point he admitted, it’s just easier and quicker if I do it. And that kind of stuck out to me because it’s a lot of people’s story. Life is crazy sometimes. And so I thought, okay, I could see this being an issue, right? In the end, we want him to be able to flourish, and if he’s not able to care for himself, that really could affect those outcomes.
Dr. Bhardwaj: This is the dilemma so many families face.
The safety net parents build over years is hard to dismantle.
Letting go feels dangerous.
Dr. Kyle Davis works closely with Brittany to guide young patients through one of the most delicate phases of care: the shift from pediatric to adult medicine.
His role often means looking not just at the patient, but at the family dynamics that surround them鈥攁nd how those dynamics shape readiness for independence.
Dr. Kyle Davis: I think when families are having a hard time letting go, they know that they need to. It’s just really hard because they have spent probably 18 years trying to keep their kids from getting hurt. That’s really hard for parents to feel like their kids are ready, just because they’re hitting that age 18, and we say, okay, now’s the official transition time.
Dr. Bhardwaj: It鈥檚 not just about logistics. It鈥檚 about uncertainty鈥攐n both sides.
The teenager is unsure if they鈥檙e capable, the parent is terrified of what might happen if they aren鈥檛.
Savage: There was a lot of anxiety surrounding taking ownership of these infusions, but not just with Joe, but with the father and knowing how to step back.
CHAPTER 2: THE TEAM
Dr. Bhardwaj: This is where a multidisciplinary team matters most.
Savage: So I knew personalizing his care was really gonna be necessary. We really realized that this was gonna take a wraparound effort and collaboration within the multidisciplinary team providers.
Dr. Bhardwaj: 鈥奣ransition isn鈥檛 an event鈥攊t鈥檚 a process.
Savage: Within hemophilia treatment centers we have a multidisciplinary team of staff members who come alongside the patient and family to provide the best care possible.
Dr. Bhardwaj: These teams don’t just treat hemophilia鈥攖hey build trust.
Savage: We hold comprehensive clinic visits annually and that particular patient and their family comes to the visit, and they speak with all of these different disciplines. They are seeing not only hematologists and advanced practice providers, but also nursing, social work, physical therapy, dental hygienists, genetic counselors. The list goes on.
Dr. Bhardwaj: This visit is simply the beginning.
Behind the scenes, all of those different perspectives come together to answer an essential question: What does this patient truly need right now?
Savage: And so after somebody comes in for a comprehensive care clinic visit we as a multidisciplinary staff come together and we talk about what happened during the appointment and we’ll even bring up some other nuances related to patient care. Anything that we know about the patient that would be helpful for the other staff member to know about.
Dr. Bhardwaj: The team works to figure out what鈥檚 really holding a young person back: skills, confidence, or something deeper.
Savage: I’ll never forget after this meeting with Joe and his family, connecting with our pharmacy nurses, connecting with his physician and other multidisciplinary staff members and really going through some of his fears and some of his struggles at that time. We knew that anxiety was an issue for him and that it was affecting his ability to self-infuse and move forward with some self-care.
Dr. Bhardwaj: Joe鈥檚 anxiety isn鈥檛 just background noise鈥攊t鈥檚 directly shaping how ready he feels to take on self-infusion.
And so managing that anxiety becomes part of the clinical plan.
Savage: If you’ve got some unchecked anxiety that can really make a difference in outcomes and being able to care for yourself. So I remember that coming up in a meeting with social work, making sure that treatment was optimized so that he was better able to handle other things that came his way. So it was something that our social work team was always monitoring and assessing and communicating where he was at with making sure that he was being managed from that regard with his anxiety.
Dr. Bhardwaj: The team leans in.
Not with a single mandate, but with persistence.
Savage: It was, Hey, listen. Joe is having an issue with self-infusion. How can we wrap around and help encourage him through this? How can we have those conversations, not just during office visits, but during phone calls. Hey Joe, how are your infusions going?
Dr. Bhardwaj: Joe鈥檚 care isn鈥檛 a series of isolated appointments.
It鈥檚 alignment across the whole team.
Savage: But it really takes consistency across different staff members. If one person is the only one that’s encouraging self-management. That can really be hard when no one else on the team is encouraging the same, right? So it really took teamwork and collaboration from that regard. Just communicating with pharmacy and making sure that as they were talking to him on the phone that we were checking in and making sure that we knew how he was doing. Our entire team really wrapped around him.
Dr. Bhardwaj: 鈥奣hey call between visits, check in consistently, and reinforce the same message: You can do this. And we鈥檒l help.
Savage: A few staff members that really stick out aside from pharmacy, myself, and the physician, was physical therapy, as hemophilia really can affect joint health and repetitive bleeds into the joint can lead to joint disease.
Dr. Bhardwaj: In hemophilia, joint health isn鈥檛 a side note鈥攊t鈥檚 central. Every bleed leaves a trace, and over time, those traces add up.
Savage: And Joe does have joint disease in a couple of areas.
Dr. Davis: He had evidence of bleeding into an ankle and elbow. And there’s a real opportunity when we are seeing these findings to try and intervene or modify our treatment plan. Between myself and our physical therapy team and Brittany, there’s this opportunity to all get together, put our heads together about what are we doing right, what are we doing wrong?
Dr. Bhardwaj: Every clinic visit, every acute episode, is an opportunity for education.
Savage: And so PT was really involved in his care. And so there were a lot of touch points there. He would come in with an acute bleeding episode or even routine care and they would talk to him about his joint health and what put him at risk for worsening joint disease and what he could do prevention wise and when.
Dr. Bhardwaj: And here鈥檚 where the team does something simple but profound: they ask Joe about his life.
Not just his joints. Not just his infusions.
But his goals, his interests, the things he wants to do.
Savage: They’re really asking him about his goals and what he wants to do in life, because that helps us understand how we can help them. What are your plans? Are you physically active? What sort of activities are you involved in? What are your interests? What do you do for work and what do you wanna do for work? And so they really wrapped around him during this time as well and really encouraged him to care for himself and care for his joints. And I think that was really beneficial.
CHAPTER 3: THE WHY
Dr. Bhardwaj: But for a patient to really accept lifelong treatment, they need more than education.
They need meaning.
They need the 鈥渨hy鈥�.
Dr. Davis: I’ve always said that I’m a why person. So if somebody tells me to do something, I will do it, but I wanna know the why. So I always think of the same thing for my patients. They need to buy in with what we’re telling them. They need to understand that to be on a regular intravenous prophylactic regimen is gonna save their joints long term, but they need to believe it themselves.
Dr. Bhardwaj: So the team shows Joe the erosion of cartilage.
The slow but real story written into the joints themselves.
For many patients, that moment is transformative鈥攖he 鈥渨hy鈥� suddenly staring back at them from a screen.
Dr. Davis: So when we can show them the ultrasound and show them that their joints have changed, show them, Look at your left ankle, and look at your right ankle. That you no longer have the same amount of cartilage protecting your joint, where you’re starting to develop some changes that are suggesting you’re gonna have more trouble walking by the time you’re a parent and you’re gonna have trouble chasing after your little kid. I think those opportunities to really show them on the screen with the ultrasound right there in front of them have been really impactful for buy-in with our patients and for the care.
Dr. Bhardwaj: Once Joe could see that protecting his joints wasn鈥檛 just about avoiding pain, but about preserving the life he imagined for himself, the regimen stopped being a burden鈥攁nd started becoming an investment.
What makes that moment so powerful isn鈥檛 just the image on the screen.
It鈥檚 that the message comes through every member of the team.
Dr. Davis: So that communal approach, that multidisciplinary approach between the physical therapy team, the physician team, the nursing team, and the pharmacy team, they really come together and have really changed how we manage our patients.
Dr. Bhardwaj: And when a teenager hears the same truth from every angle, it begins to sink in. That鈥檚 how buy-in happens.
And that same approach鈥攆inding the right messenger at the right moment鈥攇uides the next big step.
Because moving from pediatric to adult care isn鈥檛 just about handing over a chart.
Savage: We do transfer from the pediatric hematologist to the adult hematologist and I think there’s really a lot of thought that goes into that, especially just with different personalities and what that patient might need from their provider. I think developing rapport and a trusting relationship is really key.
Dr. Bhardwaj: That鈥檚 the heart of transition鈥攔apport and trust.
It’s not just matching a patient to an expert, it鈥檚 about matching them to a person 鈥攁nd a team鈥攖hey’ll connect with.
Savage: And Joe was no different. I was really thinking about who he might connect with and realizing that really matters. And we paired him up with his new adult hematologist, and he really connected with this adult hematologist. And I think he really felt like he could trust him.
Dr. Davis: His adult hematologist, who’s non-judgmental, speaking eye to eye with him, not gonna sugarcoat it. I’m gonna tell it how it is. And they really connected in a way that was important for his care.
Dr. Bhardwaj: The honesty, the lack of sugarcoating鈥攊t signals respect.
It tells Joe: you鈥檙e ready, and we believe you can handle this.
Savage: I remember his hematologist was just very transparent and went through quite a bit of detail with him. And gave him the impression of, you can handle all this information. I’m not gonna sugarcoat anything or leave some things out because you’re too young to understand or anything like that. It was like, I trust that you’re an adult now and you can handle these things and so I’m gonna treat you like one. And I think that really made a difference. And he was also really non-judgmental and encouraged transparency. He encouraged teamwork and I think he, I think that really played a huge role in Joe’s ability to move forward and feel like he could just push through to actually see that he could care for himself in the end.
Dr. Bhardwaj: Transparency isn鈥檛 just information-sharing. It’s a partnership. Joe isn鈥檛 being managed anymore鈥攈e鈥檚 being trusted.
Savage: I think trust, being able to, for him to put trust in us and him feeling like we were putting trust in him, right? It wasn’t just a checklist of things that we were wanting him to do.
Dr. Bhardwaj:鈥� And when a patient feels that trust, that鈥檚 when responsibility starts to stick.
CHAPTER 4: FROM CHILD TO ADULT
Savage: I remember the first time that Joe actually called us and talked to us on his own, and I was thrilled. Like I thought we had gotten to this point, oh my gosh, we’ve been encouraging him to pick up the phone and talk to us on his own for so long, and it’s come, the time has come. And I remember him sounding pretty nervous about it. You could tell that he was like, okay, they’ve told me that I’m supposed to do this. I’m doing this, I’m picking up the phone and I’m doing it. And he did a great job. We were coaching him through that phone call. I felt like it was such a breakthrough because, okay, we can talk to him. We can, it’s so much easier to get in, to get answers from the patient. It’s not like a game of telephone. Sometimes when you’re talking to a parent or family member about clinical details or you’re wanting to see how somebody is doing and it’s a family member and not the patient, it’s like a game of telephone. But I felt like it was such a game changer to hear from him specifically, and he had finally gotten to the point where he could do it.
Dr. Bhardwaj: That single phone call symbolizes more than independence.
It marks the shift from child to adult, from Joe being spoken for to speaking for himself.
Dr. Davis: He was coming to the table as an adult and taking that responsibility.
Dr. Bhardwaj: That shift鈥攆rom being cared for, to taking ownership鈥攊s the essence of transition. It鈥檚 not a moment, it鈥檚 a process. And it works when the team creates the right space for a young person to step forward.
Dr. Davis: He came from his parents having a relationship with his pediatric provider, him having a childhood relationship with his pediatric provider to, being the adult in front of his adult hematologist.
Dr. Bhardwaj: What you hear there, is the handoff done well. Not just a transfer of charts, but a transfer of trust. A young man meeting his adult hematologist on equal terms and feeling recognized as capable.
Dr. Davis: I think one of the things that really helped in Joe’s case was just a non-judgmental sense. These are the things that I need you to do to take care of yourself. And if you’re not meeting that, we want you to be open and honest with us. Come and explain what’s going on so we can help you, come back to the table and help you.
Dr. Bhardwaj: That honesty mattered. It set a tone: no judgment, no sugarcoating鈥攋ust partnership. And when patients feel safe to admit what鈥檚 hard, that鈥檚 when we can actually help. That鈥檚 when confidence builds.
Dr. Davis: I think confidence in that ability to advocate for themselves is such a huge part of our young guys’ experience, especially as we start to see them becoming more independent. And I think that we as the providers start to recognize that confidence coming from them.
Dr. Bhardwaj: That kind of confidence doesn鈥檛 come from a single encounter, or a single provider. It comes from repetition, reinforcement, and a web of support.
Dr. Davis: Even though a television show puts the doctor at the forefront. The reality of most healthcare experiences is that the nurses and the other providers are really the most important. We get to come in the room and make sure all is well at the end, but all the other pieces of the pyramid are really what make the care successful.
Savage: In the end, it’s about this personal connection. It’s about feeling that they can trust us and we can trust them, and that we’re in it together. We’re collaborating. We’re a team. We’re all a team.
CHAPTER 5: LESSONS
Dr. Bhardwaj: That鈥檚 the real lesson here: transition is not a checklist. It鈥檚 not just about age 18 or moving a chart from one desk to another.
It鈥檚 about relationships, about preparing families and young people emotionally, about building confidence, and about making sure the entire team is aligned.
Good transition means continuity鈥攐f care, of trust, and of voice.
It means teaching patients the 鈥渨hy,鈥� so they believe in their own treatment.
And it means leaving them with the certainty that they are not stepping out alone.
Because in the end, the goal isn鈥檛 just to keep them safe today.
It鈥檚 to equip them with the confidence, the skills, and the support to stay safe鈥攁nd stay well鈥攆or the rest of their lives.
SHOW CLOSING
Dr. Bhardwaj: Thanks to nurse practitioner Brittany Savage and Dr. Kyle Davis for speaking with us.
This is DDx, a podcast by 乐播传媒. 乐播传媒 is an app that lets doctors share clinical images and knowledge about difficult-to-diagnose cases.
I’m Dr. Raj Bhardwaj, host and story editor of DDx.
Head over to figure1.com/ddx where you can find full show notes, speaker bios and photos.
This season of DDx was produced in partnership with and sponsored by Sanofi.
Thanks for listening!