SEGMENT 1: As children with congenital heart disease (CHD) become adults with adult congenital heart disease (ACHD), they continue to require specialized care and will need that care and monitoring for life. Find out why this is an important — and growing — area of specialty care.
SEGMENT 2: It takes hours of preparation, planning and education by a multidisciplinary team before a high-risk pediatric cardiology patient can leave the walls of a hospital and head for home. Identifying risk factors and mitigating them at the point of discharge is key! Since 2019, the Supervised Family Care Program at the Nemours Children’s Cardiac Center has been utilized to ensure the safe discharge of high-risk cardiac patients.
Guests:
Devyani Chowdhury, MD, MHA, Cardiologist, Medical Director, Adult Congenital Heart Disease Program, Nemours Children’s Cardiac Center, Delaware
Deepika Thacker, MD, Pediatric Cardiologist, Medical Director, Cardiac Inpatient Unit, Nemours Children’s Cardiac Center, Delaware
Dana Zingo, RN, Specialty Nurse, Nemours Children’s Cardiac Center, Delaware
Producer, Host: Carol Vassar
EPISODE 54 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine: The Nemours Children’s Health Podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you are here, let’s go.
MUSIC:
Let’s go, oh, oh. Well Beyond Medicine.
Carol Vassar, podcast host/producer:
Congenital heart disease, or CHD, is a structural or functional issue of the heart that one is born with. It is the most common type of birth defect. The Centers for Disease Control and Prevention indicates that CHD affects about 40,000 babies born each year in the US, with one in four of those babies having a critical or severe form of CHD requiring surgery or other procedures in the first year of life. The good news is that recent medical advancements in treating CHD have significantly decreased the mortality rate for this population, and more of them are surviving to adulthood than ever before. We’ll learn more about one of these advancements. A new supervised family care program for babies discharged after cardiac surgery in a few minutes. But first, as children with CHD become adults with adult congenital heart disease or ACHD, they continue to require specialized care and will need that care and monitoring for life. Dr. Devyani Chowdhury is medical director of the Adult Congenital Heart Disease Program at the Nemours Cardiac Center in Wilmington, Delaware. She joins us to talk about the importance of specialized care for adults born with congenital heart disease.
Dr. Devyani Chowdhury, Nemours Cardiac Center:
What adult congenital heart disease means is that these children who were born with congenital heart disease either their hearts were palliated or repaired, but now they’re adults, and they had a heart that needed some help, but that heart continues to need help. So, the message for congenital heart disease patients is lifelong care. You’re born with congenital heart disease; you die with congenital heart disease.
Carol Vassar, podcast host/producer:
Is this something new?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
Well, it is new because we, the pediatric cardiologists and the pediatric surgeons and the entire pediatric team, anesthesia, ICU, have done a phenomenal job saving these children. So initially, the goal was, is my child going to live? And if these kids got into their early teens, people thought it was a success. But now these children are surviving into adulthood, and at this time in the United States, there are more adults with congenital heart disease than children, and we have over 2 million adults with congenital heart disease.
Carol Vassar, podcast host/producer:
You are an adult congenital heart disease expert. How is that different from a standard adult cardiologist?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
An adult cardiologist is only trained to take care of non-congenital heart disease, like somebody needs a coronary stent, you get a heart attack or you go into AFib. That’s what an adult cardiologist does. Adult congenital cardiologist is the one that will deal with congenital heart disease, and there are two pathways. You can do pediatric cardiology, which is what I did, and then I took my boards and became an adult congenital cardiologist. Or you can do adult cardiology and train for a few more years in congenital cardiology and become an ACHD provider. So ACHD providers right now in the country are only about 300 to 350 board-certified ACHD providers for a 2 million population. So it is a challenge for us; our workforce is a challenge to provide care, but for patients who have congenital heart disease, when they are looking for a cardiologist as an adult, they must look for that word congenital in there. They should not just go to adult cardiology. The congenital world is far more important than the adult world, and that’s what the patients need to realize.
Carol Vassar, podcast host/producer:
So this is really a growing field. If we have more adults now with congenital heart disease than children, this specialty, your specialty, is really a growing field. Talk about that.
Dr. Devyani Chowdhury, Nemours Cardiac Center:
It is definitely a growing field, and it is also the ethical thing to do because if we fix these children, it’s our job to take care of them as they go through life. We just cannot leave them. And a lot of these adults will require a re-intervention. So, they would require another heart surgery. They need a pacemaker. They have rhythm problems. Pregnancy is an issue. Mental health is an issue. Dental care is an issue. There’s so many issues that these patients have that needs to be addressed with the center that totally understands all these needs. But at the same time, we need our congenital team because they need to understand so if you need surgery, they need to go to a congenital surgeon, they need an echo lab that needs to be a congenital echo lab that actually understands how to even look at this heart.
Carol Vassar, podcast host/producer:
If someone has had heart surgery, say as a child, they grow into an adult, they’re feeling well, do they still need follow-up from an adult congenital heart specialist?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
As I said, it’s a lifelong follower, lifelong care. That’s the message. And this is something very common because what happens is these children grow up. They have initially first few years of life, they need surgery, interventions, in and out of hospital, things kind of stabilize after that. They go through middle school, they go through high school. Parents are in a good place. Oh, my child’s like any other kid, on the baseball team, on the soccer team doing this, doing that. They go away to college, and boom, they’re in their twenties and thirties, something happens.
They pass out, they have a blood clot, something changes. That’s when they realize, oh my God, this was not a cure. I was never cured, actually. And the parents have their own reasons why they don’t transition, that it’s a lot of stress for them. And as young adults, it depends on how much education has been given to them. Do they really understand, and are they ready to be adults with congenital heart disease? We actually did a study in Nemours, and we found that 84% of our patients are not ready or do not have the confidence to be an adult with congenital heart disease.
Carol Vassar, podcast host/producer:
How do you get that confidence? How does it happen that somebody can gain that confidence as they’re a young adult because you’re going through a lot as a young adult?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
So, to get that confidence, what our study showed is that education is the biggest piece. And with that, we’ve also had to put in mental health services because the kids are in a denial. They have PTSD. There are so many things. So if a child comes to you, say a patient comes to you who’s now 21 years old and has never really been to a doctor alone, and now they are the ones driving the visit because they’re adults and the law says the parents can only come if they give permission, blah, blah, blah. And they’re talking to you, and all that’s going in through their head is, “I’m going to need another surgery. I’m going to need another surgery. This is going to really hurt.” And that’s going, they don’t hear a thing of what you say. They just don’t hear you; they don’t understand you. But if the same patient is now connected to a psychologist who talks to them, who prepares them for this visit and say, well, you’ve got to listen to what your doctor’s trying to tell you.
Carol Vassar, podcast host/producer:
Let me ask this. Part of the education process, I’m guessing, is lifestyle. Talk about what lifestyle needs to be brought in for somebody with adult congenital heart disease.
Dr. Devyani Chowdhury, Nemours Cardiac Center:
Well, it depends on what type of congenital heart disease you have that will decide what restrictions in lifestyle you have. But usually, my major mantra to every patient is, you’ve had one surgeon come near you, you don’t want another one. It’s a good excuse to be heart-healthy. Don’t become overweight. Don’t become hypertensive. Don’t let your cholesterol go. Control things that you can. You couldn’t control that you were born with this, but control the environment that you can. And in terms of activity, we really encourage every patient to be physically active. Many patients are not allowed to do competitive sports. Some patients we discourage from having pregnancies, though we never say never have it, but we counsel them about the risks of their pregnancy.
So those are the lifestyle things, and the other very important thing about lifestyle is that at least I tell these patients when they go out into the world, and they’re looking for life partners, it’s really important they don’t shortchange themselves and land up with a situation that has a huge baggage that doesn’t work because they’re not less than anybody else. So that’s, again, self-esteem. You want to make sure their self-esteem is where it needs to be. And then I encourage that the moment they’re dating or with somebody that looks like a serious relationship, they have to bring that person into the office to us directly to talk to me specifically. I want them to talk to our team because that spouse understanding that congenital heart disease just changes the life for that person.
Carol Vassar, podcast host/producer:
Let’s talk about a woman who maybe had a surgery as a child, gets married, wants to have children of her own. What are the risks?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
Again, it depends on what the congenital heart defect was, where you a one-ventricle patient, two ventricle patient, do you have complications, what your heart function is like? So there is this whole field of cardio obstetrics that opens up with that. So you need a congenital cardiologist, you need a maternal-fetal medicine person, and you need to start having these conversations very early. So in the Nemours, we make sure that every patient has an established, every female patient has an established gynecologist way before they plan all this. This is all part of counseling, and I think a 16-year-old girl can show up pregnant.
So you really need to make sure they understand what they’re going into. And one comment I like to make, which a patient said to me one time: he’s a 35-year-old man, he comes in, and he needs heart surgery now. He has tetralogy of Fallot, he had surgery as a newborn, and now, 30 years later or 35 years later, he needs surgery again. And he came to me, and he said to me, “You are telling me something that I have no control over this decision, but that I should have heart surgery or not. My parents made that decision, and now this decision is being forced on me. I don’t have a choice but to say yes to the heart surgery.” So that was a little bit of an insightful comment that how we take away these people… We are forcing these adults into a world that they didn’t sign up for, actually.
Carol Vassar, podcast host/producer:
Let me ask this. You’ve mentioned the different types or alluded to the different types of adult congenital heart disease. What are the most common types?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
So, the most common congenital heart defect is a ventricular septal defect, which means it’s a hole between the two lower chambers. That’s the simplest heart disease overall. Close those holes. Those patients do really well. But it’s the complex diseases with a single ventricle, Fontan patients, patients who were born blue with tetralogy of Fallot, which is the commonest cyanotic heart disease. Those are the patients that need re-operations or something, and they come to us. So at Nemours, we are seeing a lot of referrals for young women who are pregnant, and they come to us pregnant, and we seeing a new patient for the first time who’s now in her second trimester. That’s a real challenge for us because we don’t know what she looked like before she got pregnant.
So again, education to our community. Once these patients get to that, assume everybody’s going to get pregnant; let’s start preparing for it. Let’s do a stress test. Let’s do a heart monitor. Let’s make sure they’re aware of what this means. Take away the medications that can hurt the baby, and the fetus may not survive. Teratogenic medications have to be taken away from the patient if they’re in the childbearing age. So there are a lot of things we can do to make these patients lives productive and have a great quality of life.
Carol Vassar, podcast host/producer:
What services does Nemours provide at our various hospitals and centers across Florida and Delaware for patients with adult congenital heart disease?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
So, the adult congenital heart disease at Delaware has been set up in a way that we… So apart from seeing patients in Wilmington, we have also have an extensive outreach. And the reason we did that is that if a child, a little child at the age of four, was used to seeing the cardiologist in New Jersey and now all of a sudden they’re being told, you got to drive two hours to Wilmington, that becomes a barrier at multiple levels. So we feel to encourage compliance, we will have outreach clinics, so we travel wherever the patients are. So, we have multiple clinics around Pennsylvania. We have clinics in New Jersey where we see these patients. In addition to that, we realized that there are four services in addition to just doing cardiology that’s a must for every adult congenital patient. So, one is a dentist. You get a lot of calls from patients that now they have a dental abscess and nobody wants to take care of them because local anesthesia will not be good enough.
They have so many other risk factors. Now, no new dentist wants a kid with an abscess or a young adult with an abscess walking into their office. So it’s a must for us that every patient has established dental care, every patient, because you go back to your dentist if there’s an issue. If somebody does not have a dentist, Nemours has a great dental program, and our cardiac patients are actually given the fast-track route to get in if there is a problem. So dentistry is one. Secondly, mental health. Mental health is absolutely imperative. So, every adult congenital who sees us sees a psychologist at the same time. Dr. Kenovitz, Dr. Erica. So, within our program, every patient gets seen, every patient, and they are willing to see the patients even on a video call, which works phenomenally. So, every time I have an adult patient who’s going for heart surgery, I make sure they get a consult.
They prepare them for that surgery. They do a consult in the hospital, they see them afterward. Tremendous, tremendous help. Number three, we make sure that our patients have gynecology services, the females. So Nemours has an adolescent gynecology program, and the gynecologist who works are also adult gynecologists and can transition these patients to the local adult hospitals. So, these patients now have a familiarity. We know they have congenital heart disease, so we have that. The fourth important thing is an exercise prescription. So we make sure each and every patient of ours has an exercise program close to home, that they’re exercising regularly because every study shows good exercise means good outcomes. So we definitely offer these four pieces apart from all the cardiac services, of course. We can do cath, we do surgery, we do MRI, we do CT, all the cardiac stuff. But this is the additional stuff to offer the complete package of care for the adult congenitals.
Carol Vassar, podcast host/producer:
What’s your message to adults with congenital heart disease?
Dr. Devyani Chowdhury, Nemours Cardiac Center:
So I would say to adults with congenital heart disease that we are shared partnership in care. Lots have been done to get them to where they are, and we would love to carry the torch forward with them by making them partners in healthcare so they can lead a normal, happy, productive life to the best of their ability. And let us help you do that. Let’s partner with that. Let’s work together.
Carol Vassar, podcast host/producer:
Dr. Devyani Chowdhury is the medical director of the Adult Congenital Heart Disease Program at the Nemours Cardiac Center in Wilmington, Delaware.
MUSIC
Carol Vassar, podcast host/producer:
It takes hours of preparation, planning, and education by a multidisciplinary team. Before a high-risk pediatric cardiology patient can leave the walls of a hospital and head for home. The timing must be right, and the full attention and commitment of the child’s caregivers is required. Since 2019, the supervised family care program at the Nemours Cardiac Center has been utilized to ensure a safe discharge for high-risk cardiac patients. High risk in this case, according to Nemours pediatric cardiologist Dr. Deepika Thacker, includes…
Dr. Deepika Thacker, Nemours Cardiac Center:
Racial or ethnic minority, non-English speaking families, maternal age less than 21 years, living far away from a cardiac care center, coming from a low income or a higher percentage of families that live below poverty level in a certain zip code and primary Medicaid insurance.
Carol Vassar, podcast host/producer:
Additional risk factors include infants who have been hospitalized since birth for at least two weeks. Those requiring three or more prescribed medications once they return home or those families who may have child protective services involvement. For more on this promising discharge planning model, we turn to Dr. Thacker as well as Dana Zingo, a cardiac specialty nurse, also with the Nemours Cardiac Center, who begins our conversation.
Dana Zingo, Nemours Cardiac Center:
We have worked together with a lot of other people in the cardiac center to be able to do a supervised family care program. And our work builds off of each other from this process. So we take these high-risk families and their patients and we ask that they not only learn the medical skills that they need to take care of their children at home, but that they demonstrate that care in the hospital before going home. So this way they have extra support with the nurses and other staff right at hand. Through that process, they get to practice the routine of care and then have an opportunity to ask questions and get reeducation of any skills that maybe we thought we had taught but maybe they didn’t learn correctly the first time. So it’s really just this fantastic program to help support our families before they go out at home and have less readily available resources. And then Dr. Thacker has gone on from that to do her own research.
Dr. Deepika Thacker, Nemours Cardiac Center:
So, as far as the supervised family care project, we always say you wouldn’t want someone driving a car without passing a test. And so it’s something similar to that. We are sending these really sick children sometimes home with their families, and we definitely want to be able to make sure that the families have all the resources required to care for them. And then, like Dana said, we took some of these families that we said had poor post-discharge outcomes. So either got readmitted, unplanned readmissions within 30 days, or missed their first outpatient appointment, or did not clear their supervised family care process prior to discharge.
And we identified those families that had either social or medical risk factors from those families, and we interviewed them. So we interviewed 16 of those parents or caregivers, but then families only know what they know. So we also felt that we would be amiss if we didn’t also interview the healthcare providers who were involved in their discharge planning. So including Dana, who’s our discharge coordinator, a group of cardiologists, nurses, social work, therapy services, a very multidisciplinary group of people to come up with, what can we do better to help these families feel supported and develop sort of a tool to help them to improve the outcomes post discharge?
Carol Vassar, podcast host/producer:
I’m going to pull on that word multidisciplinary. Talk about that aspect of this program. Who’s involved, who does it take? Who else might be bringing knowledge and information to bear so that parents can bring their kids home safely?
Dr. Deepika Thacker, Nemours Cardiac Center:
So it is truly multidisciplinary in the true sense of the word. Really, the group is led by Dana and our case manager, so our discharge coordinator and our case manager. And then involves, like we said, everybody in our therapy services group. So our clinical psychologist, occupational therapy, physical therapy, social work, our nutritional services, the nurses on the floor, the advanced practice providers and the cardiologists. And then we meet once a week to go over the care needs of all the patients who are admitted to the hospital. But we also talk several times during the day in between those meetings.
We’ve also set up a meeting then to discuss our needs with the outpatient staff that will take care of these families after discharge. And Dana has been very instrumental in bridging some of those care gaps because what happens is the families go home and know who is responsible for them since they’re not on the inpatient floor, the inpatient team is not really responsible and the outpatient team may not have met them recently. So there is a little bit of a gap in that period, and we don’t want that to fall through that crack.
Carol Vassar, podcast host/producer:
Dana.
Dana Zingo, Nemours Cardiac Center:
Overall, it just takes a tremendous amount of work from a lot of people within the cardiac center, and we have this incredible team that Dr. Thacker mentioned that just doesn’t stop caring for these patients after they leave our doors. And so we’re really focused on the handoff of care into the outpatient world, and we coordinate with Nemours Care Management Program, where there are nurses and other staff who help some of our families manage the complexity of care between different services. We will hand off to our outpatient speech therapist or to the outpatient nurses. Sometimes, our cardiologists see patients at satellite locations or non-Nemours physicians due to where they live. And so we will just make sure we find out who those people are and help coordinate the care so that they’re aware of the complex needs of these patients.
Carol Vassar, podcast host/producer:
Once the child is home and outpatient care begins, where’s the medical home? Who’s the person who’s really heading this up? Is this the primary care provider? Who would that be?
Dr. Deepika Thacker, Nemours Cardiac Center:
You would think it would be the primary care provider. But what happens a lot of times in the case of kids with complex cardiac conditions is that the primary care providers usually defer to the cardiologist. So I think in the outpatient world, it is a combination of the patient’s primary cardiologist along with, like Dana mentioned, a very dedicated team of outpatient nurses and therapy services. However, like I said, if the patient has been recently discharged, that outpatient team may not be completely aware of all the needs of the child who was in the hospital for an extended period of time. And I feel it is our job as the inpatient team that we provide all that information and all the tools that the outpatient team will need to then support the family and their needs.
Carol Vassar, podcast host/producer:
Does primary care have a role at all in here? Is primary care part of this team?
Dr. Deepika Thacker, Nemours Cardiac Center:
Primary care is absolutely a part of this team because we partner very closely with them for monitoring the child because a lot of times the distance from the child’s home to Nemours or even to one of our satellites is quite a bit. And so the primary care provider is the one that’s closest to the family, and they have the ability to see them more frequently, so we will use them to even monitor the weight of the child, oxygen saturations, make sure they follow up on any labs that may be ordered, medications that need to be administered, the weight, the feeding regimens of the children. So they’re a very integral part of the team.
Dana Zingo, Nemours Cardiac Center:
And for some of those primary care physicians, they’re the ones who are noticing if there’s been a sudden change for our patients or if there’s a new change for someone that we haven’t seen yet. So, definitely, they’re a frontline resource for us.
Carol Vassar, podcast host/producer:
Does telemedicine play a role in any of this?
Dr. Deepika Thacker, Nemours Cardiac Center:
So I would say telemedicine played a huge role during the time of the COVID-19 pandemic when there were a lot of restrictions related to in-person visits and also the family’s ability to find childcare for their other children at home. We find that telemedicine is effective in a few situations. So if you need to modify certain medications that you already have a plan to change or if you need to take a quick look at the wound and you’re somewhat concerned, but really to provide a very comprehensive evaluation for our patients, which usually involves an echocardiogram as well as an electrocardiogram, we require them to come in for in-person visits.
Dana Zingo, Nemours Cardiac Center:
But for some of our satellite locations that may not have a registered dietician or a speech therapist at the site, we do make sure that the parents are comfortable with providing the care in the home. And then once they’ve met with some of those professionals for a while, then they can utilize telehealth options because we recognize that can be a barrier for being able to seek out care.
Carol Vassar, podcast host/producer:
Let’s talk about the families, the parents who are taking this still pretty sick child home. You talked about providing them with education and support. Expand on that, go deep into that, and tell me what those supports are and what that education is.
Dana Zingo, Nemours Cardiac Center:
So overall, we want to make sure that they can recognize any signs of problems at home. So safety is a big factor. We will teach them about the cardiac defect that their child has and what has been done to either resolve that issue or to make life improved for the patient. And that could include going over the medications, what they are, why the patient is taking them. We review the schedule, we will also go over how to draw up a dose. So with pediatric medications, they’re often in liquid form, so we make sure that the parents are able to accurately measure the doses. We’ve noted through this program that the syringes that are used between our inpatients and some pharmacies are not always using the same measurements.
So we teach families about that difference to make sure that there’s not errors at home. We will do the same for their feeding regimen. So if patients have a nasogastric tube or a G-tube, we make sure that they know the feeding schedules, what type of formula or breast milk that their child is receiving, are we adding extra calories or fortification to that, and how to do the mixing instructions because in that case the mixing instructions will be different for home. There’s wound care for our post-surgical patients. We encourage families to take a picture of what that wound looks like at discharge, so that’s easier for them to track the changes.
We’ll teach them how to keep it clean. We do review of sternal precautions, so our kids are not always able to do tummy time right away post-surgery or lift those heavy backpacks that happen at school. Maybe they need a school note and need to talk to their physical education teachers about why they shouldn’t participate for a while. In some families’ instances, our patients are no longer able to play competitive sports where there might be a blow or hit to the chest. So those are a lot of our main cardiac-type things. But parents have all kinds of questions, so we try to link them with whatever information they need to know.
Carol Vassar, podcast host/producer:
And other resources such as psychosocial and…
Dana Zingo, Nemours Cardiac Center:
Yes, we have the cardiac lead program, and that is our neurodevelopment program that will help assess the growth and development of our patients who have undergone cardiac bypass.
Carol Vassar, podcast host/producer:
Let me ask this: has this become the standard across Nemours for discharge of high-risk pediatric cardiac patients?
Dr. Deepika Thacker, Nemours Cardiac Center:
It’s the standard of care for the patients we identify as high-risk. It’s a huge resource. So what happens is that we do this process only when the child is completely ready to go home. So let’s say they would’ve gone home today, we keep them for an additional 12 to 24 hours to complete this process. And so they are staying in the hospital sometimes a little bit longer. We do have the family come in, and so they have to leave their other children and come in and stay with the child for that duration of time, so it may be a little bit of an additional burden on the family to do that.
So, we are not doing it for all the patients. We are doing it for the ones we feel that absolutely require it. We do find that about 20% of the families still are not ready to go home and they would’ve been sent home had it not been for this process. And so we then provide them with additional training and resources to overcome those gaps in teaching. And very rarely, but we had to sometimes say that you’re not safe to go home yet.
Carol Vassar, podcast host/producer:
It sounds like it’s an extra layer of protection and prevention. Dana.
Dana Zingo, Nemours Cardiac Center:
It is. It helps us identify what it is that we haven’t taught well, what perhaps we might’ve missed because our frontline staff operate in shifts. So who you have on Monday might not be the same person doing the teaching on Tuesday. And so this is a way for us to make sure that not only have we taught all the information, but that the caregivers are able to demonstrate that care, that they’ve learned it. And we also did some surveys after the first phase of our program, and feedback from our caregivers who participated in the SFC process rated themselves as feeling more confident in taking their children home. It’s a tremendous thing for these families who often have had their children hospitalized since birth, juggling demands, especially during the COVID years with not being able to visit as much, siblings couldn’t visit in the hospital.
It was a lot to juggle, and it still is for families, even with some of our visitor restrictions being lifted. So it’s just a wonderful process of being able to demonstrate the routine of care, and that is what we learned that we were missing. A lot of the situation was driven by our bedside nurses with questioning on the day of discharge why it is that there was so much information that they were going over. They noticed that the families were overwhelmed. They noticed that they’re just ready to get home because sometimes they’ve been with us for months, and they’re ready to get back to their home life. Patients are eager to get out the door. It was just not the ideal situation to make sure that the families had learned what they needed to learn. This helps us move a lot of the teaching aspects of the discharge process earlier in their stay. And we will probably in the future look to see if we are improving our discharge rates with getting families out the door rather than holdups due to family education.
Carol Vassar, podcast host/producer:
That was going to be my next question. What has been the result of having this implemented since 2019? Have you seen lower readmission rates? Have you even monitored any of that?
Dr. Deepika Thacker, Nemours Cardiac Center:
We do monitor the readmission rates, and I don’t think the goal is really to… Or I don’t think that it would be fair to assess the readmission rates as a measure of the success of this process because there are many factors that go into readmission. It could be medical factors, social factors, a lot of other things. I think what we have measured, and we have shown as Dana said, has improved the family’s comfort with taking their child home for discharge. And also I feel like it has reduced the errors with medication and formula mixing because we are actually testing them. So, we are catching the 20% number that I quote. Those are errors that are happening in the hospital that would have happened at home. So the fact that we are able to pick up those errors before the patient goes home and correct them, I think, is a measure in itself.
Carol Vassar, podcast host/producer:
Dana, I want to ask you, do you see this as a hot topic, something that people are really looking at and considering as they discharge these high-risk patients?
Dana Zingo, Nemours Cardiac Center:
Yes, I would certainly think it is. It’s definitely a special interest of mine, and I think anyone who works with our cardiac population would agree that it is something that’s critically important: the safety of our patients as well as for their families to be comfortable taking them at home. And that’s where kids do best. We don’t want any of them to stay in the hospital or come back to us because of errors made at home. So this program is not only helping our staff to feel less stress at the time of discharge. Did I catch everything? What does this family know? Do I really feel like they understand what they need to do when they go home? Now, we have it in a simplified program for our families to be able to demonstrate it, and we can all feel confident in their caregiver abilities. It’s just a really awesome thing to see with their families.
Carol Vassar, podcast host/producer:
So there are benefits to both staff and families.
Dr. Deepika Thacker, Nemours Cardiac Center:
So we actually did nursing surveys as well after an initial round of SFCs, and we found that the staff was also pretty happy with it and felt that it increased their comfort in discharging some of these high-risk families. We have had tremendous interest from other centers to try and adapt this process. We have the manuscript, which has been accepted for publication in pediatric nursing, so I think it should be coming out in the next couple of months for everyone to see. We have been able to share some of these processes on the PAC3 forum, which is a collaborative of pediatric acute cardiac care centers across the nation, and there was tremendous interest, again related to this process. And so I think centers are looking for whatever they can do to improve caregiver comfort and the safety of their high-risk patients for discharge. So I think we are all learning from each other, and I think this is a great initiative.
Carol Vassar, podcast host/producer:
Dr. Deepika Thacker is a pediatric cardiologist. Dana Zingo is a cardiac specialty nurse. Both are with the Nemours Cardiac Center.
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Well Beyond Medicine.
Carol Vassar, podcast host/producer:
Thanks as always to our guests for taking the time to share their expertise. Dr. Devyani Chowdhury, Dr. Deepika Thacker and Dana Zingo, all with the Nemours Cardiac Center. And thanks to you for listening. Are you an adult with congenital heart disease? What has been your experience receiving care as an adult? Leave us a voicemail on our website, nemourswellbeyond.org. There, you’ll also find all of our previous podcast episodes. You can also subscribe to the podcast there and leave a review. That’s nemourswellbeyond.org. Our podcast production team for this episode includes Cheryl Munn, Susan Masucci, Che Parker, and Alison Micich. Join us next time as we explore the concept of menstrual equity. I’m Carol Vasser, until then, remember, we can change children’s health for good well beyond medicine.
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Let’s go, oh, oh. Well Beyond Medicine.
