CHD Talk with Stanford Psychologists
Having CHD or caring for someone with CHD is a long and hard journey. It is ok to not be okay sometimes. You are not alone and there is support when you need it. A Stanford Adult Congenital Heart Program cardiologist and two psychologists from Stanford Children’s Health and Stanford Health Care discuss adjustments that many CHD patients are experiencing and share their recommendations for when to get help, how to ask, what to ask for and what are the best ways to maintain good mental health.
Featured Speaker:
Anitra Romfh, MD, is passionate about the care of adults with congenital heart defects. She is part of the Adult Congenital Heart Program team—a joint program between Stanford Children’s Health and Stanford Health Care—and a clinical associate professor of medicine and pediatrics at the Stanford University School of Medicine. Her areas of expertise include pulmonary hypertension associated with congenital heart disease, cardiovascular intensive care (CVICU) of adult congenital heart patients including pregnant patients, exercise physiology, and transitional care from pediatric to adult congenital heart care. Following her undergraduate degree in chemical engineering, Dr. Romfh completed medical school at Chicago Medical School and a medical pediatrics residency, as well as an adult cardiology fellowship at the University of Chicago. She also pursued two additional fellowships in Adult Congenital Heart Disease (ACHD) and CVICU at the Boston Adult Congenital Heart program through the Brigham and Women’s and Boston Children’s hospitals. Her research interests include Eisenmenger syndrome, immunologic abnormalities in Fontan patients, and exercise physiology. Through this work, Dr. Romfh has come to appreciate the emotional growth that occurs along the journey of living with a heart defect from birth to adulthood. She believes that the patient-provider relationship is strengthened by communication, coping skills, and behavioral health. The optimal care is to offer patients and their families a team approach with psychologists who are experienced in the cardiac field.
Learn more about Anitra Romfh, MD
Katie Sears Edwards, PhD, is a psychologist at Stanford Health Care and clinical assistant professor at the Stanford University School of Medicine. She received her undergraduate degree from Stanford University and graduate degree from the University of Houston. Dr. Edwards completed her predoctoral internship and postdoctoral fellowship in behavioral medicine at the Palo Alto VA. She is the founder of the adult Cardiac Behavioral Medicine program at the Stanford University School of Medicine, which she currently co-directs. Her research interests include measuring the health impact of behavioral treatments for cardiac patients and the assessment and treatment of PTSD resulting from medical trauma. She enjoys exercising, meditating, and spending time with her husband and young sons.
Learn more about Katie Sears Edwards, PhD
Lauren Mikula-Schneider, is a pediatric psychologist at Stanford Children’s Health and clinical associate professor at the Stanford University School of Medicine. She received her bachelor of arts from Ohio Wesleyan University and then attended graduate school at Nova Southeastern University, where she received her doctorate in clinical psychology. She completed her predoctoral internship in child psychology at Lucile Packard Children’s Hospital Stanford, followed by a postdoctoral fellowship in pediatric psychology at the Stanford University School of Medicine. In 2011, she joined the Department of Psychiatry and Behavioral Sciences as a clinical faculty member, with clinical and research efforts focused on the intersection of medical illness and psychological functioning. She co-directs the Medical Coping and Wellness Clinic in Child Psychiatry and is actively involved in advising and supervising psychology and psychiatry trainees. Dr. Schneider enjoys cooking and being active outdoors with her husband and two young children.
Learn more about Lauren Mikula Schneider, PsyD
Anitra Romfh, MD | Katie Sears Edwards, Psychologist, PhD | Lauren Mikula-Schneider, Psychologist
Anitra Romfh, MD, is passionate about the care of adults with congenital heart defects. She is part of the Adult Congenital Heart Program team—a joint program between Stanford Children’s Health and Stanford Health Care—and a clinical associate professor of medicine and pediatrics at the Stanford University School of Medicine. Her areas of expertise include pulmonary hypertension associated with congenital heart disease, cardiovascular intensive care (CVICU) of adult congenital heart patients including pregnant patients, exercise physiology, and transitional care from pediatric to adult congenital heart care. Following her undergraduate degree in chemical engineering, Dr. Romfh completed medical school at Chicago Medical School and a medical pediatrics residency, as well as an adult cardiology fellowship at the University of Chicago. She also pursued two additional fellowships in Adult Congenital Heart Disease (ACHD) and CVICU at the Boston Adult Congenital Heart program through the Brigham and Women’s and Boston Children’s hospitals. Her research interests include Eisenmenger syndrome, immunologic abnormalities in Fontan patients, and exercise physiology. Through this work, Dr. Romfh has come to appreciate the emotional growth that occurs along the journey of living with a heart defect from birth to adulthood. She believes that the patient-provider relationship is strengthened by communication, coping skills, and behavioral health. The optimal care is to offer patients and their families a team approach with psychologists who are experienced in the cardiac field.Learn more about Anitra Romfh, MD
Katie Sears Edwards, PhD, is a psychologist at Stanford Health Care and clinical assistant professor at the Stanford University School of Medicine. She received her undergraduate degree from Stanford University and graduate degree from the University of Houston. Dr. Edwards completed her predoctoral internship and postdoctoral fellowship in behavioral medicine at the Palo Alto VA. She is the founder of the adult Cardiac Behavioral Medicine program at the Stanford University School of Medicine, which she currently co-directs. Her research interests include measuring the health impact of behavioral treatments for cardiac patients and the assessment and treatment of PTSD resulting from medical trauma. She enjoys exercising, meditating, and spending time with her husband and young sons.Learn more about Katie Sears Edwards, PhD
Lauren Mikula-Schneider, is a pediatric psychologist at Stanford Children’s Health and clinical associate professor at the Stanford University School of Medicine. She received her bachelor of arts from Ohio Wesleyan University and then attended graduate school at Nova Southeastern University, where she received her doctorate in clinical psychology. She completed her predoctoral internship in child psychology at Lucile Packard Children’s Hospital Stanford, followed by a postdoctoral fellowship in pediatric psychology at the Stanford University School of Medicine. In 2011, she joined the Department of Psychiatry and Behavioral Sciences as a clinical faculty member, with clinical and research efforts focused on the intersection of medical illness and psychological functioning. She co-directs the Medical Coping and Wellness Clinic in Child Psychiatry and is actively involved in advising and supervising psychology and psychiatry trainees. Dr. Schneider enjoys cooking and being active outdoors with her husband and two young children.Learn more about Lauren Mikula Schneider, PsyD
Transcription:
Scott Webb: Having congenital heart disease, CHD, or caring for someone with CHD is a long and hard journey. It's okay to not be okay. Sometimes you're not alone. There is support when you need it. A Stanford adult, congenital heart program cardiologists, and two psychologists from Stanford. Children's health and Stanford health care are here with us today to discuss adjustments that many CHD patients are experiencing.
And share their recommendations for when to get help, how to ask what to ask for and what are the best ways to maintain good mental health.
And I'm joined today by Dr. Lauren McCullough Schneider. She's a pediatric psychologist at Stanford, children's health and clinical associate professor at the Stanford university school of medicine.
And I'm also joined by Dr. Anitra Romfh She's a cardiologist on the adult congenital heart disease program. A joint program between Stanford children's health and Stanford healthcare and clinical associate professor at the Stanford university school of medicine. And my third guest today is Dr. Katie Sears Edwards.
She's a psychologist at Stanford healthcare and clinical associate professor at the Stanford university school of medicine. This is health docs from Stanford, children's health. I'm Scott Webb. It's great to have you all here today. Thank you so much for your time and Dr. Romp, I'm going to start with you. What is congenital heart disease or CHD and how prevalent is it in the United States?
Dr. Anitra Romfh: well, approximately A one in a hundred babies are born in the United States with congenital heart disease, and it consists of a type of defect in the heart that essentially exists since birth. Thankfully, due to advances in medical care, good survival occurs and, now, there are more adults than children living with congenital heart disease.
Scott Webb: Yeah, that's so great to hear, so how do you care for patients with CHD, children and adults, at Stanford Children's Health and Stanford Health Care?
Dr. Anitra Romfh: Well, we're fortunate at Stanford to have a coordinated program between Stanford Children's Health and Stanford Health Care that embraces the patient and provides continuity of care for patients from birth to adulthood. We provide and exceptional continuum of care and this is done through a multidisciplinary approach. We have close coordination between clinical providers of various specialties. It goes beyond cardiology and really tries to look at the whole patient. And this occurs throughout the spectrum from pediatric to adult care. Having our hospitals connected physically actually helps enhance that collaboration. There's no barrier of having to go to a different hospital for our patients. We really just direct them down the hall.
We strive to provide patient-centered and family-centered care at both Stanford Children's Health and Stanford Health Care to care for the whole patient through a comprehensive ACHA-accredited center to provide high quality comprehensive care that collaborates with several community hospitals as well. Dr. Schneider, are what seems to be the hardest thing for CHD patients and/or their families when learning that they or their child has to live with this lifelong heart condition?
Dr. Lauren Mikula-Schneider: Upon getting a diagnosis, we often see shock and uncertainty in the patients and in the parents. I think at diagnosis, there's a lot of questions that come about wondering what this is really going to entail, how will this play out in their life or in their child's life. We see a difference depending upon the timing of diagnosis and the circumstances. So for instance, if the diagnosis occurs pre-birth versus later on in childhood or maybe even later on in adulthood, we can see a different degree of loss and therefore different adjustment along that continuum.
If the diagnosis is in utero or as an infant, these individuals tend to grow up with CHD and it's really all that they know. Parents though might have a loss and grief associated with the expectations they had for having a healthy child. For children or even adults diagnosed later in life, there could be loss of the life that they had pre-diagnosis because now they have this new comparison of life post-diagnosis.
We know with all patients and their families, there's a time of diagnosis and adjustment. For parents, we hope that they can come to see CHD is only one part of their really complex and wonderful child. We hope that it doesn't consume their whole life and acknowledge that grief and loss are common reactions to work through with any diagnosis including CHD.
With our pediatric and young adult patients, we work to help them come to a place where CHD is a part of them and their story, but hopefully not their entire story.
Scott Webb: And Dr. Edwards, as somebody who works with adults, what's your perspective on this?
Dr. Katie Sears Edwards: So I think when a person is diagnosed with CHD in adulthood, it can feel a little bit different. There still is an element of shock and uncertainty and sometimes even a sense of disbelief that this problem was there all along and they didn't know it. But for some, it can actually validate unexplained symptoms they've had all along and can feel like an explanation that they've been looking for. I think for adults, there's more of a challenge with making an identity shift and the hardest thing is adjusting their expectations for the future after a lifetime of being told that their hearts were healthy and normal.
Scott Webb: And Dr. Romfh, what does followup care look like or consist of for patients with CHD, both children and adults?
Dr. Anitra Romfh: Followup care for CHD is lifelong and requires outpatient clinic visits. These visits may occur in person or maybe a mix of in-person or video visits as, throughout the pandemic, we've had to expand even more to telehealth. Communication can occur through messaging or phone visits. And at Stanford Children's Health and Stanford Health Care, we take a team-based approach with a mix of nurses, advanced practice providers and physicians to provide the best care along the spectrum.
Scott Webb: And Dr. Schneider, does CHD have an effect or does it have to have an effect on meeting developmental milestones and achieving life goals?
Dr. Lauren Mikula-Schneider: CHD could possibly impact meeting developmental milestones, but not always. And one of the things we have come to appreciate is that it may be more so dependent upon the timing of surgeries and hospitalizations; how long the hospitalization is, when it is occurring, that might delay, but not necessarily derail development.
Here at Stanford Children's Health detains really invested in making sure that the patient is progressing and putting the right supports in place to provide developmental assessments or interventions to help our patients get back on track with their development.
Scott Webb: And Dr. Edwards, how about your perspective when you're dealing with adults and helping them to achieve those life goals? How does that work
Dr. Katie Sears Edwards: So for the most part, CHD patients are able to achieve the goals that they set for themselves. If a life goal involves significant physical risk, then CHD can impact this, but we’ve seen a lot of people overcome even some of those challenges. So for example, we see a number of adult patients face the challenge of pregnancy. And it can be really tricky depending on the person's unique medical characteristics. However, with advanced reproductive technologies and surrogacy and adoption, there's an opportunity for all of these patients to become parents if they want to, even if they can't carry their own pregnancies. So it's not always easy, but with the patient-centered care that we provide at Stanford, we can help our patients to succeed in the areas that are most important to them.
Scott Webb: That's so great to hear, that those that want to be parents can have that opportunity. And Dr. Romfh, back to you. How does a parent's involvement in their child's CHD care change over time? How can a teen or adult, you know, take an active role in managing their own CHD?
Dr. Anitra Romfh: So in childhood, the younger child or the more dependent patient with multiple care needs may make the parent the focus of a history and medical decision-making. But in the adolescent years as you alluded to, we parallel our care with the metamorphosis of that child growing into an adult. As such, we work to empower that teen with skills to be able to understand his or her health condition and the future implications.
As an adult, many patients are independent in their decision-making, but parents or other family members like significant others and so on, may continue to play a role, especially where the episode of care involves a procedure or hospitalization.
Scott Webb: And Dr. Schneider, you working with children and adolescents, I'm sure you have some thoughts about this as well.
Dr. Lauren Mikula-Schneider: Definitely. On the pediatric side, we aim to begin conversations with regards to self-management and increasing independence early on. We follow the American Academy of Pediatrics recommendations to actually begin this process as early as age 12, to allow for a more gradual preparation and to sort of pass the baton on from parent to the adolescent patients so to say.
We try to help the parents model what they're doing really explicitly, because I think a lot just happens and we try to help them begin to more actively show their adolescent what it is that they're doing with regards to management of that condition. So we'd shift from the parent doing everything to maybe them doing it together and then to the parent watching the adolescent doing the task, to then the parent just reminding them and really gradually phasing out their involvement, but certainly having the parents remain involved as needed along this gradual process.
Dr. Anitra Romfh: I'd like to mention that in parallel with what Dr. Schneider is saying, that in our transition clinic at Stanford Children's Health, we work on those skills visit by visit as she said. We often begin with a needs assessment to find out where the patient is with respect to his or her autonomy, and gradually work on skills and assign homework, so that the next visit, we can put those skills into practice. And a lot of times, they may be simple things like sending a message to their provider through MyChart or using a website to learn more about transition of care and preparing for the next visit. It's these skills that we find are going to be most essential by the time they need to interact with adult providers.
Scott Webb: So Dr. Edwards, what are some of the resources available to both patients and families?
Dr. Katie Sears Edwards: So during this transitional phase, one of the biggest things that we're working on is helping the CHD patient build more independence and take ownership of their care. And there's actually a really wonderful website that's been created through collaboration between multiple centers that have CHD programs and it's called iheartchange.org. And this website is actually dedicated to helping patients with that transition from pediatric care to adult care and working through all of the behavioral steps that Dr. Romfh and Dr. Schneider referenced as far as first you're watching someone else do something for you, and then you're doing it for yourself and you're taking full responsibility.
So that's one resource that's really excellent. And in the adult care that we provide at Stanford, we also really work on trying to help the patient internalize their care and trust their own judgment. Those are some important adult milestones.
Scott Webb: And Dr. Schneider, I know caring for a CHD patient takes a village, right? Multiple specialists are involved such as cardiologists, nutritionists, speech therapists, social workers, and psychologists. Why is it important to have psychologists and social workers on the team to participate in caring for children and adults with CHD?
Dr. Lauren Mikula-Schneider: The care definitely takes a village. And at Stanford Children's and Stanford Health Care, there is a commitment to the whole person. I've seen firsthand that the cardiologist on these teams prioritize the mental health of their patients and a focus of their visits includes how the patient is doing as a whole person. When a nurse practitioner or a physician identifies concerns, having a social worker or psychologist present to step in and provide further assessment and intervention is key. It's so much easier when the care is coordinated and provided in the very same visit.
We see wide variability with regards to how our patients are doing, but roughly 25% of children and adolescents with CHD face mental health problems. We also know that adults with ADHD are more likely to experience anxiety and depression than the general population.
So knowing that there's this portion of our patients that have these particular struggles, having a social worker present to provide support and resources as well as psychologists to maybe aid in the diagnosis of mental health problems and provide further interventions, provides the best comprehensive care.
Given that there's a lot of factors to consider, when in doubt, patients and parents should ask the care team and get their perspective so that the team can help navigate these complexities, because we know that the village consists of not only the care team, but also the parents and the family members. And so our focus is really collaborating with the parents, family members, patients, and entire care team to provide them with the support that they need.
Scott Webb: Yeah, I love that collaboration. And what emotional challenges and adjustments are most children and adults with CHD facing?
Dr. Lauren Mikula-Schneider: I can start looking at our child population. In a review article using a standardized measure of behavior and emotional functioning and children, when compared with control, children with severe CHD had more internalizing problems, which categorizes things like anxiety or depression and more externalizing behaviors, which is more of the acting out or typically what comes to mind when we think of behavior problems. This was when compared to healthy controls.
We know that it's not just the CHD, but it's often the severity of the disease, as well as if that is requiring more hospitalizations, surgeries, or treatments that might influence one's coping and adjustment. And we should take all of these aspects into account when we're thinking about challenges that somebody with CHD might be facing.
When CHD results in activity modifications, it can be difficult for some of our pediatric patients. They might not be able to fully participate in PE or other physical activities like their peers. And while modifications might be required, if that patient is really interested in athletics or in physical activity, this can be a really difficult adjustment for them. No one likes to be told that they can't do something, kids included.
However, I'm encouraged by a shift in the field of pediatric cardiology that's really beginning to embrace prescriptions for exercise and activities, and is moving in that direction. And I think that with CHD, it's really important to, as a provider, ask them how it's impacting their life. It's not one-size-fits-all, and that everyone will be impacted by a lifestyle modification in the same way. And even our youngest patients have different perceptions, different interests and different values. So what's a significant loss for one might not be perceived as much of a loss by another patient. So really spending the time to see how it's impacting them is key.
Scott Webb: Yeah, I think you're so right. You said that, children don't like to be told no. Yeah, that's definitely true in all parents' experiences for sure. And Dr. Edwards, how about adults with CHD?
Dr. Katie Sears Edwards: There are really common emotional challenges and adjustments that adults have to make as well. And one leading expert has categorized these challenges into three areas. One is biomedical challenges such as the surgeries, the procedures, the hospital stays and, as Dr. Schneider was talking about, any physical limitations. The second is psychological difficulties like challenges with self-esteem and identity formation. And the third are social challenges, so things like feeling different or socially isolated from peers.
I think that all CHD patients and parents and family members and caregivers are faced with uncertainty about how that patient's unique condition will affect them and how that condition will progress. Socially, I've noticed that sometimes it's hard for adult patients to still balance that feeling of being different, with also acknowledging all that they have in common with their peers. And with regards to identity, for the adults, I see sometimes there's a transition from feeling kind of special to being a little bit more aware of losses in adulthood. And that's where we come in to try to help maximize positive coping.
Scott Webb: So Dr. Edwards, how can CHD patients, both children and adults, best cope with these challenges?
Dr. Katie Sears Edwards: The main challenge of uncertainty is difficult for all of us. We are wired as humans to be uncomfortable with it, but there are some things that can help. So getting support from family and friends; focusing on the present moment, what's happening now, not what's happening in the future; and using relaxation techniques are very helpful.
For adjustment to diagnosis or a change in status, we work on emotional processing and acceptance. We teach patients how to reframe their circumstances, sort of change how they think about things. And we also emphasize the importance of connecting with others who have had similar experiences. For anyone, uncertainty is hard, but these tools can actually reduce how hard it is.
Scott Webb: Yeah. And Dr. Schneider, how about the pediatric population?
Dr. Lauren Mikula-Schneider: Similar to the work that Dr. Edwards does with adults, we do many of the same techniques with our pediatric patients. So with children, we're focusing on many of the same skills, but we might be presenting them in a way that's more consistent with where they are in their development. At the core, it's really the same as to what Dr. Edward's doing in that we're highlighting the mind-body connection and also really helping to convey a sense of empowerment so that the patient, even the youngest of our patients, don't feel completely powerless in their situation and feel that they can cope with some of the challenges being presented.
Scott Webb: And so let's talk about life skills, Dr. Schneider. What life skills are helpful for successfully navigating CHD?
Dr. Lauren Mikula-Schneider: Like all skills, practice can be key. So utilizing the care team, not being afraid to acknowledge when something is hard can go really far. We constantly learn from patients how they're managing and navigating CHD. And from what we learned from them, we can help specific patient develop strategies. So maybe it's having an adolescent remember to take their medications or helping a parent phase out their involvement in their child's care when the time is right, we're here as a whole team to help in this process.
Scott Webb: And Dr. Edwards, regarding the adult population, what are some of the helpful life skills for the adults?
Dr. Katie Sears Edwards: this is a continuum. So Dr. Schneider and the team start working on these skills in childhood and young adulthood. And then in the adult clinic, we just kind of continue on the same path. So for adult patients, I've noticed that being organized, having good communication skills and being a strong self-advocate are important.
CHD patients often have a lot of medications to take, tests that they have to do and appointments to keep track of. So I think actually a skill at Stanford is to be using the Stanford MyHealth app regularly, setting reminders and planning ahead. Communication is definitely important for getting the best care, like getting in touch with your doctor about new symptoms. And communication is also really important for advocating about accommodations that might be necessary at work or at school, and even just educating friends and family about the condition.
Depending on the patient's age and independence level, parents might have more or less involvement in.
person executing these skills.
Scott Webb: Dr. Schneider, I'm sure a big part of your job and your work with CHD patients is really just listening, right? So you listen to them and, when you do listen to them, how do these young patients describe their lives with CHD? And do they see their lives through a different lens than maybe the rest of the world? Or do they perceive that anyway?
Dr. Lauren Mikula-Schneider: Certainly, some do, yes. And I think that we see a range in terms of how they see CHD as being a part of their identity. For some of our patients, they view themselves as incredibly different than their peers and others see themselves as barely any different. In meeting with patients. I often like to use a Venn diagram exercise that they're familiar with from some of their language arts classes. But in this modification, we'd have a circle represent them and the other circle represent their CHD and have them reflect on how much the CHD is a part of their identity and learning from them really directly through this exercise how they see CHD fitting into their lives, because I think that variability is really not to be underestimated and hearing from them specifically how it looks and how it's presenting, which can also be different over time, even for an individual patient.
Scott Webb: And Dr. Edwards, how about the adults in terms of how it looks, how it's presenting, the lens that they see their lives through? What do you hear from the adult population?
Dr. Katie Sears Edwards: I think that just like with a child population, there's a spectrum of how different our adult patients see themselves compared to others without CHD. And I think for those with milder disease, they might describe the whole experience of. A normal life with bumps in the road. So they have, active lives.
They're living the lives. They want to live, they're working. They have families and then something might come up like a nuisance and, um,, or a procedure or even a surgery that. Requires them to slow down, get more help from their families and friends, and really sort of go off track temporarily. After that often there's a possibility of resuming and either they adjust to the new normal.
Or they gradually pick up to where they left off for those with moderate or more complex disease, the picture can be a bit different. Dr. Nita ROMs has described it,, as patients saying they're waiting for the other shoe to drop. So there's a certain anxiety once a clinical status with more moderate or complex disease where, every time there's a new symptom or, some kind of unknown, there's just this uncertainty about what it will mean, and whether it represents a decline and a big functional change in life.
And so for these patients, I think there are periods of time when their CHD really kind of envelops them. And, they strongly identify with being CHD patients primarily. And I think it's really important that we recognize this anxiety and the associated depression as an integral part of the adult CHD experience for many patients.
And in fact, that's why we have psychologists integrated in the clinic at Stanford so that we can support these patients as they need.
Scott Webb:
That's great to know, how resilient and optimistic they are. That's awesome. And Dr. Schneider, are there differences in how young patients versus adult patients are impacted emotionally by CHD? And are young patients with CHD more emotionally resilient than adults?
Dr. Lauren Mikula-Schneider: So I'd say that, yes, there are differences in how young patients are impacted by CHD versus adult patients. And primarily, that's due to the time of diagnosis, but also the fact that their cognitive skills are just so unique and different as a young child. So they might not have the cognitive skills to fully appreciate the significance of having a heart condition in contrast to an adolescent or an adult who really can have that cognitive ability and a sort of appreciation for the significance.
We know that abstract thinking develops in early adolescence. And I think that's often where we might see some different emotional challenges associated with CHD as they're beginning to be able to more abstractly think about how this impacts their life and their future versus the younger child who might be more focused on the here and now and that's very appropriate for them to be there.
With our young kids, we might see more behavioral problems or procedural anxiety. And those are the type of referral concerns we're asked to assist with. But even with our young patients, we might be helping them as they ask questions to their parents or to others along the lines of why me and why do I have CHD?
But even with our young kids, we do see a lot of resiliency and that stems from so many factors. Sometimes it's a part of who they are, but sometimes it's also the result of supports that have been put into place to enhance that resiliency.
Adults are resilient too. And with the right kind of support, they can really also thrive. But we see that, just with their life experiences and cognitive reasoning skills, their adjustment might be a little bit more complicated because it involves these deeper questions about how CHD impacts their life and their future.
Scott Webb: And Dr. Edwards, does CHD always impact mental health and relationships? In other words, is that a given?
Dr. Katie Sears Edwards: I would say, no, not necessarily, although there are a lot of natural emotional reactions involved in having CHD like we've talked about already. Sometimes there's some shock on the first diagnosis and some overwhelm when there's new information. There also tend to be times when there are losses and so patients will experience normal reactions to loss, like feelings of anger and sadness.
But we also see really healthy, normal, positive emotions and a lot of areas for growth. And with regards to relationships, really not a lot that we can expect to be different. I think communication is such a key for all relationships and the same is true for CHD patients.
Scott Webb: And Dr. Edwards, what are the most common clinical mental health issues that can affect CHD patients, really of all ages?
Dr. Katie Sears Edwards: So research suggests that adults with CHD are more likely to experience anxiety and depression than the general population with about a third of patients meeting criteria for anxiety or mood disorders. If we think back to what Dr. Schneider said a little earlier, it was similar for pediatric patients, about one-quarter of pediatric patients.
Emotional symptoms can show up right before or right after a medical event or surgery, or they can arise at other times. Patients who have problems with communication or adherence to treatment, we often noticed that and we think about mental health assessment for those patients.
But also CHD patients don't always present with typical mental health symptoms. In some cases, their mental health might actually present as a medical symptom. Something like fatigue, which can be a symptom of both cardiac problems and depression. So it's actually really important for patients to be open and honest about how they're feeling emotionally and just talk openly with their caregivers.
Scott Webb: And Dr. Schneider, is it common or recommended for patients to discuss their mental health with their CHD provider?
Dr. Lauren Mikula-Schneider: It's absolutely recommended and we hope that it's becoming more common. We want our patients to thrive and not just to survive. And with that, we hope that they can tell their medical teams about their emotional challenges. If something comes up in that discussion, providers can then reach out to us after our conversation is initiated to obtain further supports for the patients.
Dr. Edwards mentioned, one doesn't need to have a clinical diagnosis of depression or anxiety to benefit from mental health services and supports when living with CHD. And the psychologists and social workers present are there to help teach coping skills and facilitate normal adjustment to this challenge that is potentially being presented with the CHD.
Scott Webb: The common thread that's run through our conversation today, Dr. Edwards, is really the importance of communication on all levels. You know, patients, families, caregivers, support people, everybody needs to communicate. So along those lines, how can CHD patients best communicate to their care team that they're struggling? And what would be useful to hear from a child or adult with CHD when they first come to counseling so that you can really help them?
Dr. Katie Sears Edwards: I think the answer to that is really just that they do and that they understand that the care team is providing holistic care, not just strictly medical-focused care. And that means if things are going not so well in other areas of life, it's still worth mentioning during the CHD visit.
If the patient does end up seeing one of us for counseling, it's really helpful for us to get a sense of how things are different from normal, what has changed. And sometimes this can be hard for patients to identify exactly what's wrong or what's changed. They just feel like something's off. But in that case, the most important thing is just getting through our door and being willing to talk with us because, with our training as counselors, we're really good at asking questions. And so together, we can figure out what's going on and make a plan for how to cope with it.
Scott Webb: Yeah, it seems like no detail is too small, especially in that initial counseling session. And Dr. Schneider, how can the care team help a CHD patient who is struggling? And is there something unique that you do at Stanford Children's Health and Stanford Health Care to help CHD patients?
Dr. Lauren Mikula-Schneider: At Stanford Children's, there's a focus on treating the whole patient and not only their heart condition. Since the care team is really the most frequently involved with these patients, they might be the first to identify when a patient is struggling. And before they even reach out to any additional supports in the multidisciplinary team, we encourage them to first ask, particularly if a patient doesn't volunteer the information. Sometimes this can be difficult for somebody to bring up whether it's the patient or the parent. And so by opening the door to that conversation, that can be incredibly helpful.
Second, to then just listen. Listening and validating can be really impactful to a patient who is struggling. And then we're fortunate at Stanford Children's to be able to have a collaborative multi-disciplinary approach so that when the care provider identifies a need, social work, who might be embedded in the clinic, there and that day can step in and/or they can consult with child psychiatry as we're also tend to frequently be available within the heart center to provide additional consultation and additional support to our patients and their families.
Scott Webb: And Dr. Edwards, I'm assuming you would echo what Dr. Schneider had to say about the unique care that patients and families receive at Stanford Children's Health and Stanford Health Care, right?
Dr. Katie Sears Edwards: Absolutely. Yeah. I really think that one of the things that's so unique here is that we have psychologists and social workers actually embedded directly within the clinic and within the care team. And this allows our providers to have ongoing collaborative dialogues about the best approaches for patient-centered care. And it also helps the patients to feel more comfortable with sometimes meeting with a mental health provider or a social worker when they might not normally do that. If they're doing it in the context of their medical visit, it feels more familiar and more comfortable.
As far as what our team can do to help patients that are struggling, our social workers provide resources for managing financial, housing, insurance, and work or school accommodation needs. They can also provide some counseling and mental health resources. And our psychologists can offer evidence-based treatments for a range of clinical problems like anxiety, depression, adjustment, poor adherence to medical recommendations, body image problems, help with decision-making about treatment and concerns about future health expectations. So we really do have a lot that we can offer, and it's a wonderful opportunity to be embedded into a medical team like this.
Scott Webb: And Dr. Edwards, what's your advice for young patients and/or adults with CHD to help them maintain good mental health? And are there, let's say, three things you'd recommend that they do every single week?
Dr. Katie Sears Edwards: Absolutely. So I'm going to mention MyHealth again, the Stanford MyHealth health app, to just check they're MyHealth account every week to make sure they're staying on top of messages and appointments and to keep up really good communication with their care providers. The second is really just a global recommendation for all of us is just to slow down. We all need to slow down a little bit. We need to practice more relaxation or meditation and just be in the moment more. And the third recommendation for CHD patients is to talk with others about their CHD. Even if it's just a typical week, maybe taking the time to highlight something that has felt different for them recently, just keep talking about it and that's the way to feel supported.
Scott Webb: Dr. Schneider, as we've discussed today, there is no one-size-fits-all when it comes to patients with CHD, both children and adults. But generally speaking, what does good mental health look like for all these patients? Um,,
Dr. Lauren Mikula-Schneider: Good mental health looks like being able to cope with the challenges of CHD and adapt to the ways that CHD influences one's life.
Scott Webb: And Dr. Edwards, from your perspective, what does good mental health look like?
Dr. Katie Sears Edwards: Like for all of us, it doesn't necessarily look like happiness all of the time. The truth is that sometimes CHD can be hard, but good mental health does look like having good communication, good connection with others and being able to get help when you need it and focusing on living your best life.
Scott Webb: That's also been a common thread today living our best lives, especially for patients with CHD. And Dr. Schneider, is there an upside to having CHD? And how does having CHD How help patients develop and grow on a unique personal level?
Dr. Lauren Mikula-Schneider: I think we want to be really sensitive to acknowledging the fact that life with CHD can be challenging and some moments of life can be more challenging than others. But we also know that when one overcomes a challenge, they become stronger. So it's possible that in the process of overcoming the challenges of CHD, that a patient or a family, when they become accepting of the CHD, they can really achieve a level of growth and be stronger for it.
Scott Webb: And Dr. Edwards, for the adult population, is there an upside to CHD? And do you have to spend any time trying to convince adults that, you know, they're going to be okay and they're going to develop and grow to their own personal expectations?
Dr. Katie Sears Edwards: That's a good question. I think it's interesting the way you said it. Do you have to spend time convincing them? It's not usually like that. Oftentimes the experiences are challenging and, as the patients come through to the other side, they realize themselves what the upside of these experiences are.
I like to think about the challenges that the CHD patients face as providing opportunity and having some of these difficult experiences can actually help them build empathy and kindness toward others. It can also kind of force them to build independence and creativity and resilience to cope with challenges that other people just don't face or don't face as early in their lives. At Stanford, our approach is really all about building skills and building an attitude of self-efficacy. The idea is almost no matter what comes with my team, I can cope with it.
Scott Webb: Definitely. And Dr. Romfh, what’s your perspective on CHD patients paying it forward or giving back?
Dr. Anitra Romfh: CHD patients can help others like them make a significant impact on their lives, really in three ways. One is through connection. The other is through advocacy. And the third way is the opportunity to participate in research if they so desire. So through connection, at Stanford Children's Health, that can look like a participation in a connection with another CHD patient There are opportunities, for example, to participate in Camp Taylor in the summertime and connect with other patients of various ages. And that support often extends beyond the camp itself.
If you're a parent of a patient with CHD, maybe that looks like being a patient family advocate or giving back and giving tours for other patients and families that are going through it. At Stanford Health Care, that could look like being part of the Patient Family Advocacy Council, where you shape the program and assess the needs through the patient lens. As was mentioned earlier, this is a very patient-centered program. Many of our patients are on that council at Stanford Health Care and help to develop letters and notify other patients of upcoming events.
And finally, on a national level, really participating in the Adult Congenital Heart Association has been a real game-changer for a lot of patients. There are local conferences, national conferences where people don't feel alone as they connect with the greater community. And that can also lead to advocacy. There may be special issues that need, for example, legislation. And it's nice to know that there's strength in numbers, that you can do something about it. You're given this deck of cards, but that you can actually do something with that deck of cards to make a positive impact. And that in turn affirms the sort of sense of self and sense of purpose beyond just giving the diagnosis of CHD.
Through Stanford Children's Health and Stanford Health Care, there are various research opportunities and participation. For example, it could be as simple as a questionnaire, an interview or it might be giving a blood sample in order to investigate further. These are certainly not compulsory for patients, but to provide an opportunity for patients to feel like they're giving back to the greater CHD community.
Scott Webb: And Dr. Schneider, when it comes to a children and adolescents, are you able to convince them or do you even have to, to try to give back?
Dr. Lauren Mikula-Schneider: Often not. No. There's often an innate desire to give back. On the pediatric side, we did a study looking at quality of life and psychological adjustment as well as perceived needs in some of our CHD patients with cardiac devices. And we were met with a lot of willingness and openness on behalf of the patients to contribute and it's really worth noting that participation in research like that has an impact, not only on the providers here, which it directly did. It actually influenced some of our practices with the information we learned about what our patient's needs are. So it pushed us to change and to improve our care, but in sharing those results, we hope that it also has an impact at institutions around the country as well.
Scott Webb: So Dr. Edwards, how can children and adults with CHD and their families connect with other CHD patients and their families?
Dr. Katie Sears Edwards: So that's a great question. And I've seen and heard about a lot of meaningful connections that occur through the Stanford Health Care ACHD peer-to-peer program. And also, as Dr. Romfh already mentioned, the Patient and Family Advisory Council is really essential to the Stanford ACHD Community and they do a lot of planning of events and social media presence. They have education and caregiver services. They put out a newsletter. So at a kind of local hospital level, that's a great way to connect. And then there are other ways at broader levels, just social media connectivity with our clinics and with broader organizations that share helpful information about CHD about events and about coping skills.
Scott Webb: And Dr. Schneider, anything to add in terms of these connection opportunities?
Dr. Lauren Mikula-Schneider: I think the one thing to add might be that we can also, with patient's permission, facilitate individual connections to other patients, and this can be really helpful connections can range from that to our more formal parent mentorship trainings through Stanford Children's Health and, in addition to that, some patient and family days to facilitate connections on an even broader scale.
Scott Webb: And we've discussed a lot of the resources today, but let's go back over them. What resources do Stanford Children's Health and Stanford Health Care offer CHD patients to help them cope with their condition throughout their lifetime and how can they best access these resources, Dr. Snyder?
Dr. Lauren Mikula-Schneider: So we know that CHD can have an effect on many aspects. And so with regards to that, Stanford Children's Health responds by being able to address all those different domains that might be impacted. So we have social workers to provide support and resources assistance to families or child life specialists who can provide education about procedures and medical conditions in a very developmentally appropriate way to our patients.
We have occupational therapy and physical therapy to facilitate rehab goals if they're affected by maybe a surgery or hospitalization. We have nutritionists present to address healthy lifestyle choices. We have the Hospital Education Advocacy Liaison program or our HEAL program to provide neuro-psychological testing and assistance or advocacy in establishing academic accommodations.
And lastly, for the psychological and psychiatric concerns, we have our medical coping and wellness clinic within child psychiatry to provide additional support to our patients. And this is really comprehensive and I think covers all aspects of a child's development. That's also really in line with the bio-psycho-social model that Dr. Edwards mentioned earlier, really being able to address each of those domains. And now with the results of the pandemic, we have telehealth which addresses a number of barriers to accessing these specialists and makes them more accessible to many of our families.
Scott Webb: And Dr. Romfh, any other resources to mention to folks?
Dr. Anitra Romfh: Communicating with your provider through MyChart if you're at Stanford Children's Health or MyHealth if you're at Stanford Health Care, are really important ways to keep up with notifications, get your questions answered.
And then lastly, visiting the Adult Congenital Heart Association, ACHA, website can provide a wealth of opportunities both locally and nationally that can help promote advocacy, wellness and keep you plugged into the greater ACHD community and CHD community at large.
Scott Webb: And Dr. Romfh, how else do you help patients to meet their life goals?
Dr. Anitra Romfh: From a personal point of view, as folks move into young adulthood, they may be having personal goals of starting a family. They may wonder if they can have a family. At Stanford Children's, we have an excellent OB-GYN program as well as maternal-fetal medicine and reproductive endocrinology. Through a multidisciplinary approach, we can help patients achieve their goals of family planning on a personal level, if they so desire.
And on a professional level, we often discuss both in the transition clinic and in the adult clinic, what are their desires for their occupation? What adjustments, if any, need to be made for their work or their schooling, et cetera? So that we can make the adjustments and make the emphasis on how to get to the goal versus what you're limited from doing.
Scott Webb: And Dr. Romfh, are there any other parting words or particular message you'd like to share with CHD patients or their families who are listening to this podcast right now?
Dr. Anitra Romfh: I'd like to emphasize the importance of lifelong care. As you've heard from this podcast, we have the joint partnership between Stanford Children's Health and Stanford Health Care. And we can help you, not only care for your heart, but care for you as the whole person and have you reach the goals that you desire both personally and professionally. CHD doesn't define you and we can help you manage this so that you can integrate with your life and have really a fulfilling life or living your best life.
I'd like to leave patients with the idea that we really want to focus on what you can do versus what you're limited from doing with your congenital heart disease.
Scott Webb: Definitely. And Dr. Schneider, what are your takeaways today?
Dr. Lauren Mikula-Schneider: One hope is that patients and families can recognize that their mental health is just as important as their physical health. And we hope that they aren't afraid to bring up the concerns to their medical team or to ask for more support. We hope that this podcast helps to normalize the need for support when living with CHD and to remind others that support can come from other patients from advocacy efforts, from their care team, from mental health providers. There's a lot of ways that our patients and families can receive support. Each patient's journey with CHD is unique, but it doesn't mean that one has to be on that journey alone.
Scott Webb: Definitely not alone. Dr. Edwards, last word to you.
Dr. Katie Sears Edwards: I guess my main message is that we're here for you. Your providers are here for you at Stanford. Our multidisciplinary team across the lifespan is here for you. There's an active community of patients and families out there that are here for you. Just get connected and ask for help when you need it.
Scott Webb: For more information on the adult congenital heart program at Stanford children's health and Stanford healthcare. Visit ACHD dot Stanford children's dot org.
Scott Webb: Having congenital heart disease, CHD, or caring for someone with CHD is a long and hard journey. It's okay to not be okay. Sometimes you're not alone. There is support when you need it. A Stanford adult, congenital heart program cardiologists, and two psychologists from Stanford. Children's health and Stanford health care are here with us today to discuss adjustments that many CHD patients are experiencing.
And share their recommendations for when to get help, how to ask what to ask for and what are the best ways to maintain good mental health.
And I'm joined today by Dr. Lauren McCullough Schneider. She's a pediatric psychologist at Stanford, children's health and clinical associate professor at the Stanford university school of medicine.
And I'm also joined by Dr. Anitra Romfh She's a cardiologist on the adult congenital heart disease program. A joint program between Stanford children's health and Stanford healthcare and clinical associate professor at the Stanford university school of medicine. And my third guest today is Dr. Katie Sears Edwards.
She's a psychologist at Stanford healthcare and clinical associate professor at the Stanford university school of medicine. This is health docs from Stanford, children's health. I'm Scott Webb. It's great to have you all here today. Thank you so much for your time and Dr. Romp, I'm going to start with you. What is congenital heart disease or CHD and how prevalent is it in the United States?
Dr. Anitra Romfh: well, approximately A one in a hundred babies are born in the United States with congenital heart disease, and it consists of a type of defect in the heart that essentially exists since birth. Thankfully, due to advances in medical care, good survival occurs and, now, there are more adults than children living with congenital heart disease.
Scott Webb: Yeah, that's so great to hear, so how do you care for patients with CHD, children and adults, at Stanford Children's Health and Stanford Health Care?
Dr. Anitra Romfh: Well, we're fortunate at Stanford to have a coordinated program between Stanford Children's Health and Stanford Health Care that embraces the patient and provides continuity of care for patients from birth to adulthood. We provide and exceptional continuum of care and this is done through a multidisciplinary approach. We have close coordination between clinical providers of various specialties. It goes beyond cardiology and really tries to look at the whole patient. And this occurs throughout the spectrum from pediatric to adult care. Having our hospitals connected physically actually helps enhance that collaboration. There's no barrier of having to go to a different hospital for our patients. We really just direct them down the hall.
We strive to provide patient-centered and family-centered care at both Stanford Children's Health and Stanford Health Care to care for the whole patient through a comprehensive ACHA-accredited center to provide high quality comprehensive care that collaborates with several community hospitals as well. Dr. Schneider, are what seems to be the hardest thing for CHD patients and/or their families when learning that they or their child has to live with this lifelong heart condition?
Dr. Lauren Mikula-Schneider: Upon getting a diagnosis, we often see shock and uncertainty in the patients and in the parents. I think at diagnosis, there's a lot of questions that come about wondering what this is really going to entail, how will this play out in their life or in their child's life. We see a difference depending upon the timing of diagnosis and the circumstances. So for instance, if the diagnosis occurs pre-birth versus later on in childhood or maybe even later on in adulthood, we can see a different degree of loss and therefore different adjustment along that continuum.
If the diagnosis is in utero or as an infant, these individuals tend to grow up with CHD and it's really all that they know. Parents though might have a loss and grief associated with the expectations they had for having a healthy child. For children or even adults diagnosed later in life, there could be loss of the life that they had pre-diagnosis because now they have this new comparison of life post-diagnosis.
We know with all patients and their families, there's a time of diagnosis and adjustment. For parents, we hope that they can come to see CHD is only one part of their really complex and wonderful child. We hope that it doesn't consume their whole life and acknowledge that grief and loss are common reactions to work through with any diagnosis including CHD.
With our pediatric and young adult patients, we work to help them come to a place where CHD is a part of them and their story, but hopefully not their entire story.
Scott Webb: And Dr. Edwards, as somebody who works with adults, what's your perspective on this?
Dr. Katie Sears Edwards: So I think when a person is diagnosed with CHD in adulthood, it can feel a little bit different. There still is an element of shock and uncertainty and sometimes even a sense of disbelief that this problem was there all along and they didn't know it. But for some, it can actually validate unexplained symptoms they've had all along and can feel like an explanation that they've been looking for. I think for adults, there's more of a challenge with making an identity shift and the hardest thing is adjusting their expectations for the future after a lifetime of being told that their hearts were healthy and normal.
Scott Webb: And Dr. Romfh, what does followup care look like or consist of for patients with CHD, both children and adults?
Dr. Anitra Romfh: Followup care for CHD is lifelong and requires outpatient clinic visits. These visits may occur in person or maybe a mix of in-person or video visits as, throughout the pandemic, we've had to expand even more to telehealth. Communication can occur through messaging or phone visits. And at Stanford Children's Health and Stanford Health Care, we take a team-based approach with a mix of nurses, advanced practice providers and physicians to provide the best care along the spectrum.
Scott Webb: And Dr. Schneider, does CHD have an effect or does it have to have an effect on meeting developmental milestones and achieving life goals?
Dr. Lauren Mikula-Schneider: CHD could possibly impact meeting developmental milestones, but not always. And one of the things we have come to appreciate is that it may be more so dependent upon the timing of surgeries and hospitalizations; how long the hospitalization is, when it is occurring, that might delay, but not necessarily derail development.
Here at Stanford Children's Health detains really invested in making sure that the patient is progressing and putting the right supports in place to provide developmental assessments or interventions to help our patients get back on track with their development.
Scott Webb: And Dr. Edwards, how about your perspective when you're dealing with adults and helping them to achieve those life goals? How does that work
Dr. Katie Sears Edwards: So for the most part, CHD patients are able to achieve the goals that they set for themselves. If a life goal involves significant physical risk, then CHD can impact this, but we’ve seen a lot of people overcome even some of those challenges. So for example, we see a number of adult patients face the challenge of pregnancy. And it can be really tricky depending on the person's unique medical characteristics. However, with advanced reproductive technologies and surrogacy and adoption, there's an opportunity for all of these patients to become parents if they want to, even if they can't carry their own pregnancies. So it's not always easy, but with the patient-centered care that we provide at Stanford, we can help our patients to succeed in the areas that are most important to them.
Scott Webb: That's so great to hear, that those that want to be parents can have that opportunity. And Dr. Romfh, back to you. How does a parent's involvement in their child's CHD care change over time? How can a teen or adult, you know, take an active role in managing their own CHD?
Dr. Anitra Romfh: So in childhood, the younger child or the more dependent patient with multiple care needs may make the parent the focus of a history and medical decision-making. But in the adolescent years as you alluded to, we parallel our care with the metamorphosis of that child growing into an adult. As such, we work to empower that teen with skills to be able to understand his or her health condition and the future implications.
As an adult, many patients are independent in their decision-making, but parents or other family members like significant others and so on, may continue to play a role, especially where the episode of care involves a procedure or hospitalization.
Scott Webb: And Dr. Schneider, you working with children and adolescents, I'm sure you have some thoughts about this as well.
Dr. Lauren Mikula-Schneider: Definitely. On the pediatric side, we aim to begin conversations with regards to self-management and increasing independence early on. We follow the American Academy of Pediatrics recommendations to actually begin this process as early as age 12, to allow for a more gradual preparation and to sort of pass the baton on from parent to the adolescent patients so to say.
We try to help the parents model what they're doing really explicitly, because I think a lot just happens and we try to help them begin to more actively show their adolescent what it is that they're doing with regards to management of that condition. So we'd shift from the parent doing everything to maybe them doing it together and then to the parent watching the adolescent doing the task, to then the parent just reminding them and really gradually phasing out their involvement, but certainly having the parents remain involved as needed along this gradual process.
Dr. Anitra Romfh: I'd like to mention that in parallel with what Dr. Schneider is saying, that in our transition clinic at Stanford Children's Health, we work on those skills visit by visit as she said. We often begin with a needs assessment to find out where the patient is with respect to his or her autonomy, and gradually work on skills and assign homework, so that the next visit, we can put those skills into practice. And a lot of times, they may be simple things like sending a message to their provider through MyChart or using a website to learn more about transition of care and preparing for the next visit. It's these skills that we find are going to be most essential by the time they need to interact with adult providers.
Scott Webb: So Dr. Edwards, what are some of the resources available to both patients and families?
Dr. Katie Sears Edwards: So during this transitional phase, one of the biggest things that we're working on is helping the CHD patient build more independence and take ownership of their care. And there's actually a really wonderful website that's been created through collaboration between multiple centers that have CHD programs and it's called iheartchange.org. And this website is actually dedicated to helping patients with that transition from pediatric care to adult care and working through all of the behavioral steps that Dr. Romfh and Dr. Schneider referenced as far as first you're watching someone else do something for you, and then you're doing it for yourself and you're taking full responsibility.
So that's one resource that's really excellent. And in the adult care that we provide at Stanford, we also really work on trying to help the patient internalize their care and trust their own judgment. Those are some important adult milestones.
Scott Webb: And Dr. Schneider, I know caring for a CHD patient takes a village, right? Multiple specialists are involved such as cardiologists, nutritionists, speech therapists, social workers, and psychologists. Why is it important to have psychologists and social workers on the team to participate in caring for children and adults with CHD?
Dr. Lauren Mikula-Schneider: The care definitely takes a village. And at Stanford Children's and Stanford Health Care, there is a commitment to the whole person. I've seen firsthand that the cardiologist on these teams prioritize the mental health of their patients and a focus of their visits includes how the patient is doing as a whole person. When a nurse practitioner or a physician identifies concerns, having a social worker or psychologist present to step in and provide further assessment and intervention is key. It's so much easier when the care is coordinated and provided in the very same visit.
We see wide variability with regards to how our patients are doing, but roughly 25% of children and adolescents with CHD face mental health problems. We also know that adults with ADHD are more likely to experience anxiety and depression than the general population.
So knowing that there's this portion of our patients that have these particular struggles, having a social worker present to provide support and resources as well as psychologists to maybe aid in the diagnosis of mental health problems and provide further interventions, provides the best comprehensive care.
Given that there's a lot of factors to consider, when in doubt, patients and parents should ask the care team and get their perspective so that the team can help navigate these complexities, because we know that the village consists of not only the care team, but also the parents and the family members. And so our focus is really collaborating with the parents, family members, patients, and entire care team to provide them with the support that they need.
Scott Webb: Yeah, I love that collaboration. And what emotional challenges and adjustments are most children and adults with CHD facing?
Dr. Lauren Mikula-Schneider: I can start looking at our child population. In a review article using a standardized measure of behavior and emotional functioning and children, when compared with control, children with severe CHD had more internalizing problems, which categorizes things like anxiety or depression and more externalizing behaviors, which is more of the acting out or typically what comes to mind when we think of behavior problems. This was when compared to healthy controls.
We know that it's not just the CHD, but it's often the severity of the disease, as well as if that is requiring more hospitalizations, surgeries, or treatments that might influence one's coping and adjustment. And we should take all of these aspects into account when we're thinking about challenges that somebody with CHD might be facing.
When CHD results in activity modifications, it can be difficult for some of our pediatric patients. They might not be able to fully participate in PE or other physical activities like their peers. And while modifications might be required, if that patient is really interested in athletics or in physical activity, this can be a really difficult adjustment for them. No one likes to be told that they can't do something, kids included.
However, I'm encouraged by a shift in the field of pediatric cardiology that's really beginning to embrace prescriptions for exercise and activities, and is moving in that direction. And I think that with CHD, it's really important to, as a provider, ask them how it's impacting their life. It's not one-size-fits-all, and that everyone will be impacted by a lifestyle modification in the same way. And even our youngest patients have different perceptions, different interests and different values. So what's a significant loss for one might not be perceived as much of a loss by another patient. So really spending the time to see how it's impacting them is key.
Scott Webb: Yeah, I think you're so right. You said that, children don't like to be told no. Yeah, that's definitely true in all parents' experiences for sure. And Dr. Edwards, how about adults with CHD?
Dr. Katie Sears Edwards: There are really common emotional challenges and adjustments that adults have to make as well. And one leading expert has categorized these challenges into three areas. One is biomedical challenges such as the surgeries, the procedures, the hospital stays and, as Dr. Schneider was talking about, any physical limitations. The second is psychological difficulties like challenges with self-esteem and identity formation. And the third are social challenges, so things like feeling different or socially isolated from peers.
I think that all CHD patients and parents and family members and caregivers are faced with uncertainty about how that patient's unique condition will affect them and how that condition will progress. Socially, I've noticed that sometimes it's hard for adult patients to still balance that feeling of being different, with also acknowledging all that they have in common with their peers. And with regards to identity, for the adults, I see sometimes there's a transition from feeling kind of special to being a little bit more aware of losses in adulthood. And that's where we come in to try to help maximize positive coping.
Scott Webb: So Dr. Edwards, how can CHD patients, both children and adults, best cope with these challenges?
Dr. Katie Sears Edwards: The main challenge of uncertainty is difficult for all of us. We are wired as humans to be uncomfortable with it, but there are some things that can help. So getting support from family and friends; focusing on the present moment, what's happening now, not what's happening in the future; and using relaxation techniques are very helpful.
For adjustment to diagnosis or a change in status, we work on emotional processing and acceptance. We teach patients how to reframe their circumstances, sort of change how they think about things. And we also emphasize the importance of connecting with others who have had similar experiences. For anyone, uncertainty is hard, but these tools can actually reduce how hard it is.
Scott Webb: Yeah. And Dr. Schneider, how about the pediatric population?
Dr. Lauren Mikula-Schneider: Similar to the work that Dr. Edwards does with adults, we do many of the same techniques with our pediatric patients. So with children, we're focusing on many of the same skills, but we might be presenting them in a way that's more consistent with where they are in their development. At the core, it's really the same as to what Dr. Edward's doing in that we're highlighting the mind-body connection and also really helping to convey a sense of empowerment so that the patient, even the youngest of our patients, don't feel completely powerless in their situation and feel that they can cope with some of the challenges being presented.
Scott Webb: And so let's talk about life skills, Dr. Schneider. What life skills are helpful for successfully navigating CHD?
Dr. Lauren Mikula-Schneider: Like all skills, practice can be key. So utilizing the care team, not being afraid to acknowledge when something is hard can go really far. We constantly learn from patients how they're managing and navigating CHD. And from what we learned from them, we can help specific patient develop strategies. So maybe it's having an adolescent remember to take their medications or helping a parent phase out their involvement in their child's care when the time is right, we're here as a whole team to help in this process.
Scott Webb: And Dr. Edwards, regarding the adult population, what are some of the helpful life skills for the adults?
Dr. Katie Sears Edwards: this is a continuum. So Dr. Schneider and the team start working on these skills in childhood and young adulthood. And then in the adult clinic, we just kind of continue on the same path. So for adult patients, I've noticed that being organized, having good communication skills and being a strong self-advocate are important.
CHD patients often have a lot of medications to take, tests that they have to do and appointments to keep track of. So I think actually a skill at Stanford is to be using the Stanford MyHealth app regularly, setting reminders and planning ahead. Communication is definitely important for getting the best care, like getting in touch with your doctor about new symptoms. And communication is also really important for advocating about accommodations that might be necessary at work or at school, and even just educating friends and family about the condition.
Depending on the patient's age and independence level, parents might have more or less involvement in.
person executing these skills.
Scott Webb: Dr. Schneider, I'm sure a big part of your job and your work with CHD patients is really just listening, right? So you listen to them and, when you do listen to them, how do these young patients describe their lives with CHD? And do they see their lives through a different lens than maybe the rest of the world? Or do they perceive that anyway?
Dr. Lauren Mikula-Schneider: Certainly, some do, yes. And I think that we see a range in terms of how they see CHD as being a part of their identity. For some of our patients, they view themselves as incredibly different than their peers and others see themselves as barely any different. In meeting with patients. I often like to use a Venn diagram exercise that they're familiar with from some of their language arts classes. But in this modification, we'd have a circle represent them and the other circle represent their CHD and have them reflect on how much the CHD is a part of their identity and learning from them really directly through this exercise how they see CHD fitting into their lives, because I think that variability is really not to be underestimated and hearing from them specifically how it looks and how it's presenting, which can also be different over time, even for an individual patient.
Scott Webb: And Dr. Edwards, how about the adults in terms of how it looks, how it's presenting, the lens that they see their lives through? What do you hear from the adult population?
Dr. Katie Sears Edwards: I think that just like with a child population, there's a spectrum of how different our adult patients see themselves compared to others without CHD. And I think for those with milder disease, they might describe the whole experience of. A normal life with bumps in the road. So they have, active lives.
They're living the lives. They want to live, they're working. They have families and then something might come up like a nuisance and, um,, or a procedure or even a surgery that. Requires them to slow down, get more help from their families and friends, and really sort of go off track temporarily. After that often there's a possibility of resuming and either they adjust to the new normal.
Or they gradually pick up to where they left off for those with moderate or more complex disease, the picture can be a bit different. Dr. Nita ROMs has described it,, as patients saying they're waiting for the other shoe to drop. So there's a certain anxiety once a clinical status with more moderate or complex disease where, every time there's a new symptom or, some kind of unknown, there's just this uncertainty about what it will mean, and whether it represents a decline and a big functional change in life.
And so for these patients, I think there are periods of time when their CHD really kind of envelops them. And, they strongly identify with being CHD patients primarily. And I think it's really important that we recognize this anxiety and the associated depression as an integral part of the adult CHD experience for many patients.
And in fact, that's why we have psychologists integrated in the clinic at Stanford so that we can support these patients as they need.
Scott Webb:
That's great to know, how resilient and optimistic they are. That's awesome. And Dr. Schneider, are there differences in how young patients versus adult patients are impacted emotionally by CHD? And are young patients with CHD more emotionally resilient than adults?
Dr. Lauren Mikula-Schneider: So I'd say that, yes, there are differences in how young patients are impacted by CHD versus adult patients. And primarily, that's due to the time of diagnosis, but also the fact that their cognitive skills are just so unique and different as a young child. So they might not have the cognitive skills to fully appreciate the significance of having a heart condition in contrast to an adolescent or an adult who really can have that cognitive ability and a sort of appreciation for the significance.
We know that abstract thinking develops in early adolescence. And I think that's often where we might see some different emotional challenges associated with CHD as they're beginning to be able to more abstractly think about how this impacts their life and their future versus the younger child who might be more focused on the here and now and that's very appropriate for them to be there.
With our young kids, we might see more behavioral problems or procedural anxiety. And those are the type of referral concerns we're asked to assist with. But even with our young patients, we might be helping them as they ask questions to their parents or to others along the lines of why me and why do I have CHD?
But even with our young kids, we do see a lot of resiliency and that stems from so many factors. Sometimes it's a part of who they are, but sometimes it's also the result of supports that have been put into place to enhance that resiliency.
Adults are resilient too. And with the right kind of support, they can really also thrive. But we see that, just with their life experiences and cognitive reasoning skills, their adjustment might be a little bit more complicated because it involves these deeper questions about how CHD impacts their life and their future.
Scott Webb: And Dr. Edwards, does CHD always impact mental health and relationships? In other words, is that a given?
Dr. Katie Sears Edwards: I would say, no, not necessarily, although there are a lot of natural emotional reactions involved in having CHD like we've talked about already. Sometimes there's some shock on the first diagnosis and some overwhelm when there's new information. There also tend to be times when there are losses and so patients will experience normal reactions to loss, like feelings of anger and sadness.
But we also see really healthy, normal, positive emotions and a lot of areas for growth. And with regards to relationships, really not a lot that we can expect to be different. I think communication is such a key for all relationships and the same is true for CHD patients.
Scott Webb: And Dr. Edwards, what are the most common clinical mental health issues that can affect CHD patients, really of all ages?
Dr. Katie Sears Edwards: So research suggests that adults with CHD are more likely to experience anxiety and depression than the general population with about a third of patients meeting criteria for anxiety or mood disorders. If we think back to what Dr. Schneider said a little earlier, it was similar for pediatric patients, about one-quarter of pediatric patients.
Emotional symptoms can show up right before or right after a medical event or surgery, or they can arise at other times. Patients who have problems with communication or adherence to treatment, we often noticed that and we think about mental health assessment for those patients.
But also CHD patients don't always present with typical mental health symptoms. In some cases, their mental health might actually present as a medical symptom. Something like fatigue, which can be a symptom of both cardiac problems and depression. So it's actually really important for patients to be open and honest about how they're feeling emotionally and just talk openly with their caregivers.
Scott Webb: And Dr. Schneider, is it common or recommended for patients to discuss their mental health with their CHD provider?
Dr. Lauren Mikula-Schneider: It's absolutely recommended and we hope that it's becoming more common. We want our patients to thrive and not just to survive. And with that, we hope that they can tell their medical teams about their emotional challenges. If something comes up in that discussion, providers can then reach out to us after our conversation is initiated to obtain further supports for the patients.
Dr. Edwards mentioned, one doesn't need to have a clinical diagnosis of depression or anxiety to benefit from mental health services and supports when living with CHD. And the psychologists and social workers present are there to help teach coping skills and facilitate normal adjustment to this challenge that is potentially being presented with the CHD.
Scott Webb: The common thread that's run through our conversation today, Dr. Edwards, is really the importance of communication on all levels. You know, patients, families, caregivers, support people, everybody needs to communicate. So along those lines, how can CHD patients best communicate to their care team that they're struggling? And what would be useful to hear from a child or adult with CHD when they first come to counseling so that you can really help them?
Dr. Katie Sears Edwards: I think the answer to that is really just that they do and that they understand that the care team is providing holistic care, not just strictly medical-focused care. And that means if things are going not so well in other areas of life, it's still worth mentioning during the CHD visit.
If the patient does end up seeing one of us for counseling, it's really helpful for us to get a sense of how things are different from normal, what has changed. And sometimes this can be hard for patients to identify exactly what's wrong or what's changed. They just feel like something's off. But in that case, the most important thing is just getting through our door and being willing to talk with us because, with our training as counselors, we're really good at asking questions. And so together, we can figure out what's going on and make a plan for how to cope with it.
Scott Webb: Yeah, it seems like no detail is too small, especially in that initial counseling session. And Dr. Schneider, how can the care team help a CHD patient who is struggling? And is there something unique that you do at Stanford Children's Health and Stanford Health Care to help CHD patients?
Dr. Lauren Mikula-Schneider: At Stanford Children's, there's a focus on treating the whole patient and not only their heart condition. Since the care team is really the most frequently involved with these patients, they might be the first to identify when a patient is struggling. And before they even reach out to any additional supports in the multidisciplinary team, we encourage them to first ask, particularly if a patient doesn't volunteer the information. Sometimes this can be difficult for somebody to bring up whether it's the patient or the parent. And so by opening the door to that conversation, that can be incredibly helpful.
Second, to then just listen. Listening and validating can be really impactful to a patient who is struggling. And then we're fortunate at Stanford Children's to be able to have a collaborative multi-disciplinary approach so that when the care provider identifies a need, social work, who might be embedded in the clinic, there and that day can step in and/or they can consult with child psychiatry as we're also tend to frequently be available within the heart center to provide additional consultation and additional support to our patients and their families.
Scott Webb: And Dr. Edwards, I'm assuming you would echo what Dr. Schneider had to say about the unique care that patients and families receive at Stanford Children's Health and Stanford Health Care, right?
Dr. Katie Sears Edwards: Absolutely. Yeah. I really think that one of the things that's so unique here is that we have psychologists and social workers actually embedded directly within the clinic and within the care team. And this allows our providers to have ongoing collaborative dialogues about the best approaches for patient-centered care. And it also helps the patients to feel more comfortable with sometimes meeting with a mental health provider or a social worker when they might not normally do that. If they're doing it in the context of their medical visit, it feels more familiar and more comfortable.
As far as what our team can do to help patients that are struggling, our social workers provide resources for managing financial, housing, insurance, and work or school accommodation needs. They can also provide some counseling and mental health resources. And our psychologists can offer evidence-based treatments for a range of clinical problems like anxiety, depression, adjustment, poor adherence to medical recommendations, body image problems, help with decision-making about treatment and concerns about future health expectations. So we really do have a lot that we can offer, and it's a wonderful opportunity to be embedded into a medical team like this.
Scott Webb: And Dr. Edwards, what's your advice for young patients and/or adults with CHD to help them maintain good mental health? And are there, let's say, three things you'd recommend that they do every single week?
Dr. Katie Sears Edwards: Absolutely. So I'm going to mention MyHealth again, the Stanford MyHealth health app, to just check they're MyHealth account every week to make sure they're staying on top of messages and appointments and to keep up really good communication with their care providers. The second is really just a global recommendation for all of us is just to slow down. We all need to slow down a little bit. We need to practice more relaxation or meditation and just be in the moment more. And the third recommendation for CHD patients is to talk with others about their CHD. Even if it's just a typical week, maybe taking the time to highlight something that has felt different for them recently, just keep talking about it and that's the way to feel supported.
Scott Webb: Dr. Schneider, as we've discussed today, there is no one-size-fits-all when it comes to patients with CHD, both children and adults. But generally speaking, what does good mental health look like for all these patients? Um,,
Dr. Lauren Mikula-Schneider: Good mental health looks like being able to cope with the challenges of CHD and adapt to the ways that CHD influences one's life.
Scott Webb: And Dr. Edwards, from your perspective, what does good mental health look like?
Dr. Katie Sears Edwards: Like for all of us, it doesn't necessarily look like happiness all of the time. The truth is that sometimes CHD can be hard, but good mental health does look like having good communication, good connection with others and being able to get help when you need it and focusing on living your best life.
Scott Webb: That's also been a common thread today living our best lives, especially for patients with CHD. And Dr. Schneider, is there an upside to having CHD? And how does having CHD How help patients develop and grow on a unique personal level?
Dr. Lauren Mikula-Schneider: I think we want to be really sensitive to acknowledging the fact that life with CHD can be challenging and some moments of life can be more challenging than others. But we also know that when one overcomes a challenge, they become stronger. So it's possible that in the process of overcoming the challenges of CHD, that a patient or a family, when they become accepting of the CHD, they can really achieve a level of growth and be stronger for it.
Scott Webb: And Dr. Edwards, for the adult population, is there an upside to CHD? And do you have to spend any time trying to convince adults that, you know, they're going to be okay and they're going to develop and grow to their own personal expectations?
Dr. Katie Sears Edwards: That's a good question. I think it's interesting the way you said it. Do you have to spend time convincing them? It's not usually like that. Oftentimes the experiences are challenging and, as the patients come through to the other side, they realize themselves what the upside of these experiences are.
I like to think about the challenges that the CHD patients face as providing opportunity and having some of these difficult experiences can actually help them build empathy and kindness toward others. It can also kind of force them to build independence and creativity and resilience to cope with challenges that other people just don't face or don't face as early in their lives. At Stanford, our approach is really all about building skills and building an attitude of self-efficacy. The idea is almost no matter what comes with my team, I can cope with it.
Scott Webb: Definitely. And Dr. Romfh, what’s your perspective on CHD patients paying it forward or giving back?
Dr. Anitra Romfh: CHD patients can help others like them make a significant impact on their lives, really in three ways. One is through connection. The other is through advocacy. And the third way is the opportunity to participate in research if they so desire. So through connection, at Stanford Children's Health, that can look like a participation in a connection with another CHD patient There are opportunities, for example, to participate in Camp Taylor in the summertime and connect with other patients of various ages. And that support often extends beyond the camp itself.
If you're a parent of a patient with CHD, maybe that looks like being a patient family advocate or giving back and giving tours for other patients and families that are going through it. At Stanford Health Care, that could look like being part of the Patient Family Advocacy Council, where you shape the program and assess the needs through the patient lens. As was mentioned earlier, this is a very patient-centered program. Many of our patients are on that council at Stanford Health Care and help to develop letters and notify other patients of upcoming events.
And finally, on a national level, really participating in the Adult Congenital Heart Association has been a real game-changer for a lot of patients. There are local conferences, national conferences where people don't feel alone as they connect with the greater community. And that can also lead to advocacy. There may be special issues that need, for example, legislation. And it's nice to know that there's strength in numbers, that you can do something about it. You're given this deck of cards, but that you can actually do something with that deck of cards to make a positive impact. And that in turn affirms the sort of sense of self and sense of purpose beyond just giving the diagnosis of CHD.
Through Stanford Children's Health and Stanford Health Care, there are various research opportunities and participation. For example, it could be as simple as a questionnaire, an interview or it might be giving a blood sample in order to investigate further. These are certainly not compulsory for patients, but to provide an opportunity for patients to feel like they're giving back to the greater CHD community.
Scott Webb: And Dr. Schneider, when it comes to a children and adolescents, are you able to convince them or do you even have to, to try to give back?
Dr. Lauren Mikula-Schneider: Often not. No. There's often an innate desire to give back. On the pediatric side, we did a study looking at quality of life and psychological adjustment as well as perceived needs in some of our CHD patients with cardiac devices. And we were met with a lot of willingness and openness on behalf of the patients to contribute and it's really worth noting that participation in research like that has an impact, not only on the providers here, which it directly did. It actually influenced some of our practices with the information we learned about what our patient's needs are. So it pushed us to change and to improve our care, but in sharing those results, we hope that it also has an impact at institutions around the country as well.
Scott Webb: So Dr. Edwards, how can children and adults with CHD and their families connect with other CHD patients and their families?
Dr. Katie Sears Edwards: So that's a great question. And I've seen and heard about a lot of meaningful connections that occur through the Stanford Health Care ACHD peer-to-peer program. And also, as Dr. Romfh already mentioned, the Patient and Family Advisory Council is really essential to the Stanford ACHD Community and they do a lot of planning of events and social media presence. They have education and caregiver services. They put out a newsletter. So at a kind of local hospital level, that's a great way to connect. And then there are other ways at broader levels, just social media connectivity with our clinics and with broader organizations that share helpful information about CHD about events and about coping skills.
Scott Webb: And Dr. Schneider, anything to add in terms of these connection opportunities?
Dr. Lauren Mikula-Schneider: I think the one thing to add might be that we can also, with patient's permission, facilitate individual connections to other patients, and this can be really helpful connections can range from that to our more formal parent mentorship trainings through Stanford Children's Health and, in addition to that, some patient and family days to facilitate connections on an even broader scale.
Scott Webb: And we've discussed a lot of the resources today, but let's go back over them. What resources do Stanford Children's Health and Stanford Health Care offer CHD patients to help them cope with their condition throughout their lifetime and how can they best access these resources, Dr. Snyder?
Dr. Lauren Mikula-Schneider: So we know that CHD can have an effect on many aspects. And so with regards to that, Stanford Children's Health responds by being able to address all those different domains that might be impacted. So we have social workers to provide support and resources assistance to families or child life specialists who can provide education about procedures and medical conditions in a very developmentally appropriate way to our patients.
We have occupational therapy and physical therapy to facilitate rehab goals if they're affected by maybe a surgery or hospitalization. We have nutritionists present to address healthy lifestyle choices. We have the Hospital Education Advocacy Liaison program or our HEAL program to provide neuro-psychological testing and assistance or advocacy in establishing academic accommodations.
And lastly, for the psychological and psychiatric concerns, we have our medical coping and wellness clinic within child psychiatry to provide additional support to our patients. And this is really comprehensive and I think covers all aspects of a child's development. That's also really in line with the bio-psycho-social model that Dr. Edwards mentioned earlier, really being able to address each of those domains. And now with the results of the pandemic, we have telehealth which addresses a number of barriers to accessing these specialists and makes them more accessible to many of our families.
Scott Webb: And Dr. Romfh, any other resources to mention to folks?
Dr. Anitra Romfh: Communicating with your provider through MyChart if you're at Stanford Children's Health or MyHealth if you're at Stanford Health Care, are really important ways to keep up with notifications, get your questions answered.
And then lastly, visiting the Adult Congenital Heart Association, ACHA, website can provide a wealth of opportunities both locally and nationally that can help promote advocacy, wellness and keep you plugged into the greater ACHD community and CHD community at large.
Scott Webb: And Dr. Romfh, how else do you help patients to meet their life goals?
Dr. Anitra Romfh: From a personal point of view, as folks move into young adulthood, they may be having personal goals of starting a family. They may wonder if they can have a family. At Stanford Children's, we have an excellent OB-GYN program as well as maternal-fetal medicine and reproductive endocrinology. Through a multidisciplinary approach, we can help patients achieve their goals of family planning on a personal level, if they so desire.
And on a professional level, we often discuss both in the transition clinic and in the adult clinic, what are their desires for their occupation? What adjustments, if any, need to be made for their work or their schooling, et cetera? So that we can make the adjustments and make the emphasis on how to get to the goal versus what you're limited from doing.
Scott Webb: And Dr. Romfh, are there any other parting words or particular message you'd like to share with CHD patients or their families who are listening to this podcast right now?
Dr. Anitra Romfh: I'd like to emphasize the importance of lifelong care. As you've heard from this podcast, we have the joint partnership between Stanford Children's Health and Stanford Health Care. And we can help you, not only care for your heart, but care for you as the whole person and have you reach the goals that you desire both personally and professionally. CHD doesn't define you and we can help you manage this so that you can integrate with your life and have really a fulfilling life or living your best life.
I'd like to leave patients with the idea that we really want to focus on what you can do versus what you're limited from doing with your congenital heart disease.
Scott Webb: Definitely. And Dr. Schneider, what are your takeaways today?
Dr. Lauren Mikula-Schneider: One hope is that patients and families can recognize that their mental health is just as important as their physical health. And we hope that they aren't afraid to bring up the concerns to their medical team or to ask for more support. We hope that this podcast helps to normalize the need for support when living with CHD and to remind others that support can come from other patients from advocacy efforts, from their care team, from mental health providers. There's a lot of ways that our patients and families can receive support. Each patient's journey with CHD is unique, but it doesn't mean that one has to be on that journey alone.
Scott Webb: Definitely not alone. Dr. Edwards, last word to you.
Dr. Katie Sears Edwards: I guess my main message is that we're here for you. Your providers are here for you at Stanford. Our multidisciplinary team across the lifespan is here for you. There's an active community of patients and families out there that are here for you. Just get connected and ask for help when you need it.
Scott Webb: For more information on the adult congenital heart program at Stanford children's health and Stanford healthcare. Visit ACHD dot Stanford children's dot org.