HEALTHCARing E It is a little hard to believe that two years have already passed since the day our UT Health Austin* clinicians welcomed their first patients on October 17, 2017. While, at the time, much of the work that led up to our inaugural day was easy for all to see (such as building out our work space in the Health Transformation Building on Trinity Street, where most of our care is delivered, and implementing all the technology-based screens and machines that support an interdisciplinary medical practice), there was another, less obvious stream of work that had begun years earlierâ&#x20AC;Ś and which continues through to today. This effort involves a wide range of physicians, medical educators, associates and administrative staff, and a collection of local and national thought leaders. It has collaboration as one of its primary principles. And it was, and remains, both challenging, and invigorating. It is the intensive process of designing a working group practice model that reflects the inclusive, whole-person, multidisciplinary approach to care that we believe is necessary to deliver the level of quality outcomes our contemporary, wellinformed patients increasingly expect, and that employers, payors and regulators all demand. It is an iterative process that will never really be finished, and it is why we all work so hard to build and maintain the most effective collaborative relationships possible with our clinician colleagues.
*The medical group practice designed and managed by the faculty and staff of the Dell Medical School at The University of Texas at Austin
Working together on what matters most.
SIMPLY STATED, OUR CARE MODEL FOCUSES ON THREE CORE PRINCIPLES:
PRACTICE DESIGN (AND REDESIGN)
COLLABORATION AND COORDINATION
By creating an environment that allows our teams of clinicians (which can include everyone from specialty surgeons to physical therapists, dietitians, nurses and social workers) to coordinate their expertise, our patients receive exactly the right care, at the right time, often in a single, convenient location. And since our UT Health Austin care teams actively include the community clinicians who entrust their patients to our care for specialized treatment, patients know that they have a full complement of skilled service providers all focused on the single shared priority of helping them to get and stay healthy.
While traditional “outcomes measures,” such as how many days a patient stays in the hospital, or what percentage of a diabetic patient population is successfully maintaining healthy blood glucose levels (HbA1c), have long been understood to reflect important aspects of care safety and quality, at UT Health Austin, our clinicians are interested in a deeper, more personal understanding of how our patients may experience the greatest benefit from the care we deliver. Therefore, our multidisciplinary Clinical Quality Committee, chaired by Amy Young, M.D., UT Health Austin’s Chief Clinical Officer, is working to identify the priorities our patients themselves choose as most accurately measuring how the care they receive improves their lives.
Perhaps no other aspect of the UT Health Austin clinical enterprise has proved to be as important as the ongoing collaboration between our clinicians and our physician partners in the community, and our organizational partners at the Ascension Seton hospitals and the Dell Children’s Medical Center, where newly created joint clinical programs are bringing the best that our organizations have to offer together for the benefit of patients from across the region, and beyond.
At UT Health Austin, the principles of practice design, outcomes measurement and effective collaboration are in our DNA. Students at the Dell Medical School experience these principles beginning with the first hours they spend in class because the Dell Med curriculum is built around the proven adult learning techniques of teambased problem solving and shared, knowledgebased leadership. With technology advancing at a pace that would have been inconceivable just a decade or two ago, producing massive amounts of data, and amazing opportunities to connect people in new and exciting ways; with the expectations of patient/consumers being influenced by their experiences with other service providers, such as online retail and on-demand multimedia content delivery; and with the (seemingly perpetual) national debate about the costs and future structure of the American healthcare system, there has never been a more opportune moment than right now for thoughtful medical professionals to come together and lead our industry forward.
It is not a simple process; and it cannot be accomplished by any one part of the complex and dynamic collection of skills, experience and perspectives that constitute what we have come to think of as “the healthcare system.” It is a process that demands communication, collaboration, and careful attention. It will require the input of everyone—physicians, physician scientists, nurses, pharmacists, patients and policy makers—if it is to succeed. But success in this work is important, we might even say, critical. Because success, in this context, means that our families, our friends and our neighbors, all of us, will have access to the compassionate, caring attention we need, when we need it, at a cost we can afford, for generations to come. And at UT Health Austin, we believe that is what matters most.
The following stories are a small sample of some of the very exciting work being done by some very creative and dedicated professionals forâ&#x20AC;&#x201D;and withâ&#x20AC;&#x201D;some very important people: our patients.
Interdisciplinary Care Teams Charge the Musculoskeletal Instituteâ&#x20AC;&#x2122;s Care Dynamic. 10
Karl Koenig, MD, FAOA, FAAOS, FAAHKS Medical Director, Orthopedic Surgeon, Musculoskeletal Institute
NO GOING BACK: CATCHING UP WITH KARL KOENIG, M.D.
ONE CLINICIAN’S PERSPECTIVE ON THE PAST, PRESENT AND FUTURE OF MUSCULOSKELETAL CARE AT UT HEALTH AUSTIN
When asked recently how things are going, Karl Koenig, M.D., Medical Director of the UT Health Austin Musculoskeletal Institute, and Associate Professor in the Dell Medical School’s Department of Surgery and Perioperative Care, offers a characteristically enthusiastic reply, “What we’re doing here, for our patients, and for everyone who is a part of our entire care team, it’s just so good that I don’t think I could ever go back. As an orthopedic surgeon, I can honestly say that this way of working, as a truly functional team that celebrates together when our outcomes are great, and that solves problems together when we face the really tough challenges so our patients are embraced in care, it’s what I’ve been working toward my entire professional life. So from my place on the team, I can honestly say that things are going great.” Internally, the team Dr. Koenig is describing is called an Integrated Practice Unit, or an IPU, a reference to the work of Michael E. Porter and Elizabeth Olmsted Teisberg, authors of “Redefining Health Care: Creating Value-Based Competition on Results,” first published in 2006. Dr. Teisberg is the Executive Director of the Dell Medical School’s Value Institute for Health & Care, and the goals and ideals of the value-based care concept run through the UT Health Austin clinical practice, and through Dr. Koenig’s work, and personal story, in particular. Dr. Koenig grew up, as he likes to say, “uninsured, and unaware.” The first in his family to ever attend college, it was not until he was in medical school that he realized that his family had been “just one sick kid away from bankruptcy” for years, if not decades. Vowing to do whatever he could to “fix” what he saw as an unsustainable system, he started asking a lot of hard questions; propitiously, he did his residency at Dartmouth-Hitchcock Medical Center in New Hampshire, which is a place known for encouraging discussion about issues that impact the greater health system as a whole. After completing a Master’s degree at the Dartmouth Institute of Health Policy and Clinical Practice, and a fellowship in complex hip and knee replacement at Stanford University in California, he returned to Dartmouth, where he was given the opportunity to build a “self-improving microsystem” around joint replacement surgery that measured data on every patient, and used that data to answer questions like, “What are we doing?” and, “Can we do it better?” When he heard that the new Dell Medical School at The University of Texas at Austin was interested in putting value-based care into practice, he knew just where he needed to be.
“For my entire career,” he says, “I have been trying to make it as clear as I possibly can that we, as clinicians, need to actively measure outcomes because we need to quantify the kind of job we are doing. Not necessarily as a measure that I am doing better than another surgeon in another organization, but to make sure that I’m doing a better job today than I was doing yesterday. And that tomorrow, I will be doing a better job than I did today.” For Dr. Koenig, the only way to get to where he wants medical practice to go, is through building and working in teams that focus on always improving their effectiveness based on real-time data. “In the Musculoskeletal Institute, we’ve taken subspecialist physicians, like upper and lower extremity orthopedic surgeons, and integrated them into these very highly functional teams, which allows us to spread their expertise across the portion of our patient population who need their skills, while ensuring that patients who would benefit from other, non-invasive physical or emotional therapies have those services built right into their care plans in an integrated and comprehensive way,” he explains. “Now that our teams have been working together for a little over two years, we’ve started introducing, and learning from, some actual patient experience measures, which is helping us better understand how we can demonstrate the value we deliver in
clear and meaningful ways.” The Musculoskeletal care teams also have a specific goal for the coming year. “What has always been true, everywhere, is that not all musculoskeletal care is surgical,” Dr. Koenig says. “And most of the musculoskeletal care we provide does not begin in our Institute. There have been estimates that as many as sixty percent of the patients who visit primary care physicians each year have some type of musculoskeletal issue. In the coming year we are going to concentrate on doing everything we can to make sure that our primary care and family medicine colleagues see themselves as actually being a part of our musculoskeletal care teams. We want them to know that our teams are ready to handle any musculoskeletal problem. We have a unit for back pain, and a unit for leg issues, and we have a unit for shoulder and arm problems. We have the kind of expertise, and collaborative communication that will make these services a seamless part of the ongoing relationship they build and maintain with their patients. And, given the way our teams feel about being a part of this practice model, we may even begin discovering new ways to work together in a kind of network of care that could be built around the around the needs, and the health of the patients we are all here to serve.”
THE SCIENCE OF PAIN MANAGEMENT
INTERDISCIPLINARY CARE IN ACTION
As described by Jonathan Geralds, Doctor of Physical Therapy at the Comprehensive Pain Management Center at UT Health Austin, today’s definition of pain is moving away from focusing exclusively on the mechanics of pain and towards the experience of pain, which is multifaceted, and complex. “The reason for this evolving definition is that we see people who have a huge amount of tissue damage, for example, a missing a limb, and they experience no pain. But the converse can also be true. Some people with very little to no tissue damage from what we can see on our most advance scans have completely debilitating pain. So for any person, their pain experience is individual and multifactorial.” Dr. Geralds and his team have found that for most people, their pain experience and recovery can be compounded by chronic sleep disturbances, financial stressors, social stressors that come from abusive relationships, isolation or work stressors, which prevent a person’s nervous system from coping as best as possible. Because that’s what pain is: a warning sign. Pain is predominantly a threat detection system. A way for our brain to warn us when we’re in danger in the hopes you’ll do something to remove yourself from that danger. And a big part of managing pain is understanding what drives it. At UT Health Austin, behavioral health is an integral component of pain management. In fact, the two biggest predictors of chronic pain are long-standing sleep disturbances and depression, which means while there are often mechanical factors contributing to pain, the mechanical factors aren’t always the key players. Treatment varies greatly from patient to patient, but Dr. Gerald’s process typically consists of three parts. Thomas Vetter, MD, MPH Pain Medicine Physician, Comprehensive Pain Management
1. HELP THE PATIENT UNDERSTAND THEIR PAIN.
2. HELP PATIENTS REENGAGE IN MEANINGFUL ACTIVITIES.
“The better someone understands why they’re hurting, the less afraid someone is to move into that pain,” Dr. Geralds explains. “If you believe moving is going to cause further tissue damage, you’re not going to exercise. You become deconditioned, more prone to flareups, and stuck in a cycle. My job, along with my team, is to identify those cycles and offer an alternative we can both agree to.”
“The good news is there are an unlimited amount of ways to exercise so if you’re creative, you can find something enjoyable for everyone,” says Dr. Geralds. “If someone can’t tolerate landbased exercises, maybe they can swim. If someone can’t tolerate weight bearing exercise, maybe they can exercise on a mat. It doesn’t matter what you do, whether it’s Zumba, swimming or yoga, it matters that you get the length and intensity needed to reap the benefits.”
3. HELP THE PATIENT GET HEALTHIER OVERALL. “Part of being a healthy person is identifying modifiable factors that make life harder and doing something about it,” says Dr. Geralds. “If workplace conditions are causing a problem, a person can seek accommodation or, if possible, a new job. Lack of social interaction has a profound impact on pain. Something as simple as five social interactions a day can improve someone’s pain presentation. And then there are the more complicated aspects of cognitive behavioral therapy that require cognitive restructuring, and that’s where my colleague in social work is critical to helping managing patients’ pain.”
When it comes down to it, concludes Dr. Geralds, it is the team that sets UT Health Austin apart. “We are not a multidisciplinary clinic,” he explains. “We are an interdisciplinary team, and that changes everything. In our model of care, a physical therapist, clinical social worker, psychiatrist, pharmacist and physicians all work in the same office and constantly communicate about improving patient care. And while patients who seek treatment for pain may enter through a medical front door, along the way we may find that there is more contributing to their pain than meets the eye. That is where our interdisciplinary structure, which involves all our various Institutes, clinics and departments, is so effective at finding a collaborative, effective solution.”
UT HEALTH AUSTINâ&#x20AC;&#x2122;S LIVESTRONG CANCER INSTITUTES BALANCE, WELLNESS AND COMPREHENSIVE CANCER CARE
Bringing together world-renowned oncologists and researchers, expert clinicians, and patient advisors in coordinated, interdisciplinary teams that focuses the full measure of their experience and expertise on each patient as a complex individual with personal goals, beliefs, priorities and perspectives, UT Health Austinâ&#x20AC;&#x2122;s LIVESTRONG Cancer Institutes began welcoming patients in December of 2018. To deliver compassionate, state-of-the-art cancer care, the LIVESTRONG Cancer Institutes combine powerful science with supportive care for the body, mind, and heart through an comprehensive approach designed to help patients and their families maintain balance and wellness through the entire cancer journey. Because the impact of a cancer diagnosis and treatment plan can often create a sense of anxiety and uncertainty, the LIVESTRONG Cancer Institutes use a model developed by Institute Director, S. Gail Eckhardt, M.D. called CaLM (Cancer Life reiMagined).
Spiritual Care Emotional, Mental and Behavioral Health Support
Integrative Therapy (Acupuncture and Oncology Massage)
Clinical Trials and Transitional Research Genetics and Molecular Testing
CaLM Care Model
Oncology Pharmacist Support
World-Class, Personalized Cancer Treatment
Palliative Care and Symptom Management
Care Coordination Screening and Prevention
Job and Legal Counseling Labs and Imaging
Fitness, Physical Therapy, Yoga
S. Gail Eckhardt, MD, FASCO Director and Oncologist, UT Health Austin LIVESTRONG Cancer Institutes
The LIVESTRONG Cancer Institutes work with two patient and family advisory boards that are charged with codesigning all clinical programs, services and materials. Each advisory board is a diverse group of in-treatment cancer patients, post-treatment survivors, and caregivers/loved ones. Patient and Family Advisory Board: Members work directly with the LIVESTRONG Cancer Institutes’ physicians, clinical providers and staff to help improve the care we provide to patients, the supports we offer caregivers and loved ones, and the ways in which we communicate in our clinic. The advisory board’s work also includes developing strategies to address disparities in cancer care in our community, offering clinical trials in Central Texas, helping patients find resources, and speaking at events in the community. Young Adult Advisory Board: Young adults (ages 18 to 40) may not fit into traditional pediatric or adult cancer care models. To develop a first of its kind Young Adult Cancer Program, the LIVESTRONG Cancer Institutes convened this advisory board in 2018. Working together, the board is assisting our clinicians as they pilot social and emotional support services, an opt-out oncology fertility program, practical supports, clinical staff training, age-appropriate information and resources, as well as educational and social events.
The proud recipients of the Association of Community Cancer Centers’ 2019 ACC Innovator Award, the LIVESTRONG Cancer Institutes currently offer care for Gastrointestinal, Gynecologic, Head and Neck, Hematologic, and Lung Cancers. Additional supportive clinical programs and access to selected clinical trials will be added in the coming months.
WOMEN’S HEALTH INSTITUTE: PRESERVING FUTURE FAMILIES FOR CANCER FIGHTERS AND SURVIVORS A COMPREHENSIVE TEAM APPROACH TO PROVIDING NEW MOTHERS, AND NEW PEOPLE, THE BEST POSSIBLE START TO A HEALTHY NEW LIFE. There are a million questions that come with a cancer diagnosis: Has it spread? What is my prognosis? How can I fight this? How can I tell my family? But one question that often gets overlooked is, How will this affect my ability to have a family? In fact, according to Sarah Felderhoff, Advanced Practice Provider and Director of Cancer Fertility Preservation at the UT Health Austin’s Women’s Health Institute and LIVESTRONG Cancer Institutes, most people diagnosed with cancer may not even be aware of the threat that certain cancers and common treatments present to their future plans and dreams. “Often before beginning chemotherapy,” she says, “patients will receive a ‘chemo teach,’ which is essentially a crash course in chemotherapy. Somewhere in this massive packet of information it might say, ‘Can cause infertility.’ Unless it is pointed out, it can be really easy to overlook.” But for younger patients, fertility preservation should be part of the care plan discussion because oncologists often have a window of two weeks or less to begin treatment following a cancer diagnosis. This is why Sarah and her partner in Cancer Fertility Preservation, Winifred Mak, M.D., are dedicated to educating patients on every possible option to preserve their fertility throughout chemotherapy, radiation treatment and more.
Interdisciplinary Care Teams Allow Women’s Health Institute Clinicians to Offer Advanced, Whole-person Care for Complex, CancerRelated Conditions.
Oncofertility, as the specialty is called, combines reproductive endocrinology and oncology to preserve the reproductive potential of cancer patients and survivors, meaning that, on a personal level, the value of the work for patients is almost impossible to measure. “We are careful to meet each of our patients where they are,” says Dr. Mak. “Whether they’ve dreamed of a family since childhood, or are too young to have even thought about having a family, or are maybe even approaching menopause, whether they’ve just begun their fight against cancer or have already won, we empower patients with the choice to build their future family as they see fit, without a diagnosis standing in their way.” For both men and women, many common cancer treatments can have a lasting impact on their plans for a family. For women, chemotherapy can cause primary ovarian insufficiency, which means that the ovaries stop releasing eggs and estrogen. For men, chemotherapy, which works by killing cells in the body that divide quickly, sperm production can be at risk. These same types of issues for both women and men can result from radiation therapy, from surgery, and even from hormone therapies, with each therapy potentially causing a range of temporary or even permanent damage. Winifred Mak, MD, PhD (Left) Reproductive Endocrinologist, Women’s Health Institute
Sarah Felderhoff, MSN, APRN (Right) Oncofertility Advanced Nurse Practitioner, Women’s Health Institute and LIVESTRONG Cancer Institutes
The Cancer Fertility Preservation program is made possible by gifts from Luci Baines Johnson, Ian Turpin and their friends, as well as members of the Dell Med Society.
“That’s why fertility preservation is so extremely personal,” Sarah says. “Whether you’re male or female, battling cancer or in survivorship, one patient’s fertility needs and goals are never the same as the next. And while the options available to help you achieve your desired outcome depend on your circumstances, the biggest factors are your age and sex. As a post-pubertal female, you have several options. Of course, the gold standard is egg freezing, which requires stimulating medication to help your body grow more eggs than you normally would in a cycle because you’re trying to get as many eggs as you can to freeze. Additionally, women can freeze an embryo with a partner prior to treatment.” Additional measures can be taken to preserve fertility throughout the course of cancer treatment, including: • Ovarian Shielding: Special shields are placed over the ovaries during radiation treatment. • Ovarian Transposition: The ovaries are surgically moved higher in the abdomen and away from the radiation field to minimize damage. • Ovarian Suppression: Hormone treatments are used to temporarily halt ovarian function For those in cancer survivorship, the process of fertility preservation may look different. “For cancer survivors,” Sarah adds, we can’t change the past, so we focus on the state of their fertility now to get them where they want to be. We do a full evaluation of their fertility and what their ovarian or sperm reserve looks like. Even if what we find is disappointing, there are still so many options. There is adoption, there are egg and sperm donors, there are gestational carriers and more. We guide each patient through it all so that every option is clear. And often, cancer survivors are able to have children in a traditional fashion.” Supporting a cancer patient through the process of preserving their fertility throughout the cancer journey requires skill and experience, and it also requires compassion and a strong sense of emotional sensitivity to help make a patient feel safe about their own health, and the potential health of their future family. “I find it’s best to let the patient lead the conversation,” Sarah concludes. “This is about them, their feelings and their hopes. I am there to make sure they know and understand the full extent of their options. It’s a sensitive subject, and the most important thing is to let the patient lead the conversation however they feel comfortable. Often patients may feel uncomfortable with the conversation, but they’ll call back and say ‘Actually, I did some more research on my own and I’m ready.’ No matter the circumstances, a cancer diagnosis is never easy. But we make sure that our patients know that we are there to walk with them, not in front of you or behind you, but right there with them, every step of the way. No matter what, my team will be there for them, and for the family they’ve always dreamed would be in their future.”
THE RARE CONGENITAL HEART DEFECT THAT ONLY A TEAM CAN TREAT:
A TEAM OF CARDIAC SPECIALISTS, FOUNDED AND LED BY CHARLES FRASER, MD, IS DEDICATED TO IMPROVING OUTCOMES OF CHILDREN IN CENTRAL TEXAS
Congenital heart defects are the most common types of birth defects, affecting 1 in every 100 babies born. While there are a variety of heart defects that range in severity, with treatment the percentage of children living healthy productive lives is very high. One of the rarest and more severe heart defects is hypoplastic left heart syndrome (HLHS), which affects about 2 to 3 percent of babies born with a congenital heart defect or about 1 in every 4,344 births. The term “hypoplastic” refers to underdevelopment of a tissue or organ. In the case of HLHS, the left side of a baby’s heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) is critically underdeveloped. The mitral and aortic valves are either completely closed, or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter. As a result the left side of the heart is completely unable to support the circulation needed by the body’s organs. Without a functioning left ventricle, the right side of the heart must perform the action of pumping blood to both the lungs as well as out to the rest of the body. Babies born with HLHS have a bluish appearance known as cyanosis as a result of mixing oxygen rich and oxygen poor blood. Because HLHS is complicated to repair, most babies need three or more surgeries after birth. The surgeries are risky and require a great deal of skill and management from a team of cardiac specialists. Carlos Mery, M.D., Congenital Heart Surgeon at UT Health Austin’s Texas Center for Pediatric and Congenital Heart Disease located at the Dell Children’s Medical Center, specializes in the management of children and adults with congenital heart disease, including complex heart defects like HLHS. “Hypoplastic left heart syndrome is uniformly fatal without surgery and this is one of the riskiest and most complex conditions we treat,” says Dr. Mery. “We treat it with a series of three operations beginning with the Norwood within the first few weeks of life, followed by the Glenn about 4 to 6 months later, and then the Fontan performed 18 to 36 months after the Glenn.”
From Monitoring and Medications, to the Most Advanced Heart Surgery Procedures, the UT Health Austin Pediatric Cardiovascular Care Team Partners with Dell Childrenâ&#x20AC;&#x2122;s to Ensure Every Childhood is the Beginning of a Healthy, Happy Life.
Ziv Beckerman, MD (Left) Cardiothoracic Surgeon, Texas Center for Pediatric and Congenital Heart Disease Charles D. Fraser Jr, MD (Center) Director, and Pediatric and Adult Congenital Heart Surgeon, Texas Center for Pediatric and Congenital Heart Disease Carlos Mery, MD (Right) Congenital Heart Surgeon, Texas Center for Pediatric and Congenital Heart Disease
•The Norwood procedure converts the right ventricle into the main ventricle pumping blood to both the lungs and the body. The main pulmonary artery and the aorta are connected and the main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead, a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs. •The Glenn procedure diverts half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle. •The Fontan procedure connects the inferior vena cava, the blood vessel that drains deoxygenated blood from the lower part of the body into the heart, to the pulmonary artery by creating a channel through or just outside the heart to direct blood to the pulmonary artery. At this stage, all deoxygenated blood flows passively through the lungs. The goal of these procedures is to reconstruct the structures of the heart to allow for the right ventricle to pump blood to the rest of the body while the vessels are redirected into the lungs to oxygenate blood without it having to pass through the heart. Because of innovations such as specialized monitoring and technologies in the operating room and approaches to care after surgery, the long-term survival rate and positive outcomes for patients born with HLHS has increased drastically in the last 30 years. Dr. Mery stresses that the survival and success of these patients is dependent on more than just surgery. “The ability to treat hypoplastic left heart syndrome is a marker of success for a program. You have to have a robust multidisciplinary team, and that doesn’t only include surgeons; it includes anesthesiologists, intensivists, cardiologists, hospitalists, nurses, therapists, staff and more, all working together seamlessly to be able to provide the care for these patients,” he says. Since The Texas Center for Pediatric and Congenital Heart Disease began seeing patients in the fall of 2018 it has expanded to include an entire dedicated cardiac unit with 24 beds and a second operating room that will help meet the high demand of the Central Texas area. This is particularly helpful for patients who are diagnosed with rare or highly complex conditions like HLHS. “Before this program, the families of babies that were diagnosed with hypoplastic left heart syndrome would have to leave Austin and relocate to Houston or Dallas for about six months, which is the time it takes between the first operation and the second operation,” says Dr. Mery. “That’s not the case anymore, we have the ability to deliver the best care to those patients right here in Austin, which is extremely exciting. It is really an honor to be able to provide this service to these amazing families.”
A MOVE WORTH MAKING: HOW ADDIE AND HER FAMILY CAME HOME
As an expecting mom, the last thing you want to hear is that something is wrong with your unborn child. A few months before Patty was due to deliver her daughter, she received news that her unborn baby girl had a congenital heart defect that would need to be treated with open heart surgery soon after she was born. Overwhelming information for any mother to hear. But as any soon-to-be mom would, she and her husband made plans to be seen by leading specialists in Texas to ensure proper treatment after their daughter was born. After being connected with a cardiologist, Patty was reassured that it would likely be just one surgery to fix the defect and the chances her baby’s condition was worse than it appeared was less than one percent. But one percent is still one percent, and one day as Patty was putting together her daughter’s nursery she got a call from her cardiologist and was told that her daughter had something called heterotaxy syndrome. News, Patty says, that was so overwhelming it took her breath away and made her feel faint. Heterotaxy syndrome is a very rare condition where the heart and other organs are not formed correctly or are in the wrong position in the body, which can cause a variety of very challenging health problems. As a result, Patty’s child would be born with many critical heart defects and would likely need several open-heart surgeries to repair. Patty and her husband wrestled with understanding the likely possibility that they may only have a few days with their daughter after she gave birth. Being Austin residents, at the time there were no programs in Central Texas that treated congenital heart defects or conditions like heterotaxy syndrome. So, Patty and her husband were forced to travel outside of Austin for care. “We moved to Houston about a month before I was due in case I went into labor early and then once we found out she would need to stay in the hospital for a while, we rented an apartment and moved semi-permanently,” says Patty. She explains it was a “figure-it-out as we go” type of situation as everything happened so quickly. Patty and her husband spent a total of nine months in Houston as their daughter, Addie, received ongoing care after she was born that included two open-heart surgeries (the Norwood and Glenn) and other procedures to manage the defects caused by her condition. As this was happening, a partnership between UT Health Austin and the Dell Children’s Medical Center led by Charles Fraser, M.D., resulted in the creation of the Texas Center for Pediatric Congenital Heart Disease in August of 2018. Led by Dr. Fraser, the new program attracted some of the finest clinicians in the country, including Addie’s surgeon in Houston, Carlos Mery, M.D. “I was really excited when I found out Dr. Mery was moving here to Austin,” says Patty, “and because he had already operated on Addie twice, we felt confident that sticking with him was the best choice.” Today, Addie is a happy two-year-old, full of laughter and smiles, bursting with energy, and eager to show off her favorite toys. And while Addie’s case may not be typical (no pediatric congenital heart case ever is), the importance of having a highly specialized and fully integrated cardiac team that is accessible to everyone in central Texas could not be more obvious. Every single member of the team is trained to treat patients and their families with these types of conditions. Even the hospital and operating room were designed to enhance health outcomes. “I see what Dr. Fraser and Dr. Mery, and everyone on the team are doing for this community,” says Patty. “And I have no doubt the program will continue to be a success. I can only see more positive changes coming for the healthcare environment in Austin.” Which is good news for Addie, and for kids everywhere.
EMBRACING EVERY CHILD IN A COMPREHENSIVE SYSTEM OF CARE HOW A COMPREHENSIVE NEUROLOGY / NEUROSURGERY PROGRAM CONTRIBUTES TO THE CARE OF ALL PEDIATRIC PATIENTS, ESPECIALLY WHEN HEART SURGERY IS PART OF THE PLAN.
For most of us, hearing that someone has experienced a stroke, a condition in which an artery either bursts and bleeds into the brain (hemorrhagic), or is internally blocked in a way that starves the brain of oxygen and other nutrients causing localized tissue damage (ischemic), almost always brings to mind an older adult. Strokes are strictly an adult, age-related problem, aren’t they? They are one of the things we have to look forward to as our bodies become less resilient over time; so of all the potential health problems a child might face, a stroke has to be about last on the list. Right? Until 1988, most people, including a large number of clinicians, would have, on principle, probably agreed. But that was before E. Steve Roach, M.D., Chief of UT Health Austin Pediatric Neurosciences at Dell Children’s, and his colleague, Anthony R. Riela M.D., published the first edition of their book, “Pediatric Cerebrovascular Disorders.” Now in its third edition, the book has become a standard text in the pediatric neurosciences, and has significantly contributed to changing the way cerebrovascular issues in children are understood. “When we discussed the work we were doing that led up to the first edition of our text book,” says Dr. Roach, “the reaction we got from most neurologists was consciously neutral, at best. The book contained information from a broad range of articles, including ones written by neurosurgeons, neonatologists, pediatric neurologists, radiologists, and other specialists. At the time, the neurosurgeons cared for children with brain hemorrhage, the neonatologists cared for newborns with stroke, and the neurologists cared for children with ischemic stroke. With all of the data compiled in a single place, it became clear that we had all been dealing with different aspects of what was in fact a larger issue. “Then MRI really came into its own as a diagnostic tool and, by the time of the publication of our third edition several years later, the field had become better organized, with an international pediatric stroke study group with several hundred members from thirty or forty different countries cooperating on research and clinical management protocols. This would have been, frankly, unimaginable 30 years ago. The number of publications about childhood stroke has gone from five or six a year in the seventies to like a hundred and fifty or more a year. And, I think it’s safe to say, the larger issue of pediatric cerebrovascular disorders is currently recognized as an important area of study, with a broad range of causes.” This last point is key, explains Dr. Roach, because, as in adults, the underlying cause of a stroke can reflect other health issues, but the underlying causes in children and adults differ. “In children,” he says, “the most common cause of these kinds of stroke-related events, responsible for about twenty-five percent of the cases we treat, is congenital heart disease. In an organization that has what is arguably the best pediatric congenital heart surgery program in the country, we understand that we simply must have a pediatric neurology program that is capable of serving all the needs these children will have during the course of their care, inside the hospital, and over time.” E. Steve Roach, MD Section Chief and Pediatric Neurologist, UT Health Austin Pediatric Neurosciences at Dell Children’s
Dave Clarke, MD Epileptologist, Comprehensive Pediatric Epilepsy Program UT Health Austin Pediatric Neurosciences at Dell Childrenâ&#x20AC;&#x2122;s
Other conditions that result in a higher risk of cerebrovascular issues in children include sickle cell disease and certain types of cancers, along with the chemotherapies associated with treating them. Even infections, such as bacterial meningitis, which is an infection of the tissue covering the brain, can result in the adjacent blood vessels becoming inflamed, which can promote blood clotting. Apart from the direct physical impact of various issues, the longer term result of different medications used to treat conditions such as childhood leukemia, call for careful neurological monitoring as part of a comprehensive treatment plan. And finally, the very fact that a child experienced a serious illness is almost certain to create a circumstance in which that child will benefit from the services of a pediatric neuropsychologist to help them adapt and refocus on any important physical or cognitive developmental benchmarks that may have been affected. Finally, says Dr. Roach, the long-term effects of pediatric strokes must, by their very nature, be considered a priority, if only because of the length of time a patient will live with the resulting problems. “Any stroke has an unavoidable risk of disability associated with it,” he explains. “But in a seventy-year old person, the potential consequences of a stroke will stretch over a finite, but relatively short, period of time. But in a five-year-old child, the resulting disability could be a fact of life for six, seven, or even eight decades. The complexity, range, and ramifications of serious childhood illnesses don’t happen in isolation. It’s what the term ‘co-morbidity’ means: the consequences from one problem manifesting themselves as other problems over time. “So we are designing the UT Health Austin Pediatric Neurosciences at Dell Children’s program to be an integral component of what will be an outstanding, comprehensive pediatric care center. With our partners at Dell Children’s, our UT Health Austin clinicians are coming together to build a system of care that will provide children and their families the full range of treatment and support they need to overcome these early life challenges and lead the most productive life possible. The work requires communication and collaboration between a range of medical disciplines, and between our organizations. It also requires that we build in mechanisms that create opportunities for the voice of parents to be heard. “I came here because I wanted to apply everything I’ve learned over a lifetime of caring for children and their families to build the kind of comprehensive pediatric program I know we need to really serve all the needs of these kids. The partnerships we are creating are already making a real difference. And I am confident that when we are done, the difference we will make will be best seen in the lives we touch; because, for our part, every one of us is touched by the amazing children and families it is our privilege to serve.”
Janet Wilson, MSN, CPNP-PC Nurse Practitioner, Comprehensive Pediatric Epilepsy Program, UT Health Austin Pediatric Neurosciences at Dell Children’s
“THERE’S NOTHING I CAN’T DO.” HOW A UT HEALTH AUSTIN PATIENT TOOK CONTROL OF HER FUTURE
Heather had never skied down a mountain before. In fact, she had never worn skis at all. So it came as quite a surprise when she found herself in skis for the first time at the top of a mountain, as a bilateral above-knee amputee. But her journey to the top was far from easy. 12 years ago, Heather was involved in a minor car accident in rush-hour traffic on the highway. She and the other party pulled over and Heather hopped out of her car to routinely exchange insurance information. In a split second that would change everything, a third car swerved straight for her. “When the dust settled, I started to look around. I saw something in front of me and realized, that’s my sock. And… that’s my shoe. My eyes continued to follow the trail. That’s my leg. An off-duty firefighter who was stuck in traffic saved my life. I was aware the whole time. When the paramedics arrived, I was coherent enough to tell them my emergency contact information and I was transported to the hospital in minutes. I am a very, very lucky person. I’m just happy to be here and happy to be alive.” As a bilateral above-knee amputee (removal of both limbs above the knee) Heather’s circumstances are unique. Of the 185,000 amputations that occur in the U.S. each year, approximately 11 percent are bilateral above-knee amputations. Of those 11 percent, very few are able to walk again. In order to get where she needed to be, Heather knew she required an extraordinary provider with a specialized skillset. She chose UT Health Austin specifically for Anthony “AJ” Johnson, M.D., Clinical Director of Sports and Injury at the Musculoskeletal Institute. During Dr. Johnson’s 28-year-long military career, he specialized in treating injured war veterans, including countless amputees. “There’s so much I want to achieve, and Dr. Johnson has a reputation in the amputee community in Austin of making things happen,” says Heather. “His history at the Center for the Intrepid, and his military experience prepared him for anything. His enthusiasm for his work and my enthusiasm as a bilateral aboveknee amputee made us a perfect match. I knew Dr. Johnson could get me where I wanted to be.” The feeling was mutual. A patient advocate at Austin Prosthetics Center, an amputee herself who has worked with Dr. Johnson, connected the two when Heather suffered a sports injury. “Heather had faced a few setbacks when she first came in,” says Dr. Johnson. “Because she is a bilateral above-knee amputee, in order to clear the ground with a running prosthetic, she must lift the prosthetic out and back around in a circular motion using her residual limb. While doing so at a running clinic, she tore her abductors. Now Heather’s goal is to get back in the game as soon as possible. Her first visit with me was to gain her trust, the second was for me to prove I know what I’m doing, and now she’s one of our own.” The difference in Dr. Johnson’s care according to Heather? Respect. “When I take my sockets off, people tend to baby me. They want to help me and make things easier for me, but that doesn’t allow me to grow,” says Heather. “Dr. Johnson treats me like an athlete. When I first removed my sockets during our visit, I was nervous. My legs didn’t look pretty. He just said, ‘Yes, that’s what it looks like to be a high-activity prosthetics user!’ AJ knows his patients on a personal level (in fact, we call him by his first name) and he understands what’s best for them. He and his patients are going to flourish at UT Health Austin.”
Dr. Johnson’s support for his patients doesn’t end in the care room. Heather says fondly that each time she tells Dr. Johnson she’s participating in an activity or sport, he wants to know when and where. He’ll be there to cheer her on. Heather and Dr. Johnson are working together to help Heather become comfortable and excel as a runner. According to Dr. Johnson, for most adaptive athletes, learning to run is a means-to-an-end and the foundation for almost any sport. This is especially important for Heather, who now organizes a group called ATX Amputees. “I want to do everything. If there is a way for adaptive athletes to participate and someone who is skilled in training adaptive athletes present, I’m there,” Heather says. “ATX Amputees is about spreading this ambition to others like me and making dreams possible. We introduce people to new things, whether it’s rock climbing, running, skiing, you name it, we help them find new passions.” According to Heather, sports and activity are critical to growth and adaptation as an amputee. “There is never a feeling of comfort walking around on two prosthetic legs,” says Heather. “It’s about always being scared, but pushing through the fear anyway. It’s what makes me feel alive.” At UT Health Austin, we’re here to help you achieve what matters most to you. Whether that’s skiing down a mountain, running a marathon or just learning to walk again, Dr. Johnson never says, “You can’t do that.” Instead, “If you’re going to do that, here’s what we can to do to get you there.”
SPORTS AND INJURY CLINIC There is no one-size-fits-all approach to fitness, and there is certainly no one-size-fits-all approach to managing the health of a competitive athlete. Just as team players rely on the entire team to come through when it counts, athletes at every level of competitive fitness can rely on the UT Health Austin Sports and Injury Clinic to keep them at the center of a personalized sports health care program designed specifically for them. Whether it’s a weekend warrior, professional athlete, or Saturday morning stroller, each UT Health Austin patient receives the expertise of providers who specialize in sports injuries and sports health—including dietitians, chiropractors, physical therapists, orthopedic surgeons and nurse practitioners. Care is tailored to the individual’s needs, and is custom designed to help every athlete stay in the game, and do their very best. Our team of providers specialize in diagnosing and treating athletic injuries, including sprains and strains, ligament and tendon tears, fractures, dislocations, multi-ligament injuries, tendonitis, joint injuries, injuries that require surgical intervention and more. At the center of the UT Health Austin Sports and Injury Clinic is Anthony “AJ” Johnson, MD. While on active duty in the US Army, Dr. Johnson cared for our combat-injured adaptive athletes in the US Armed Forces Sports Program, which includes a World Class Athlete Program and Integrative Sports Programs. Dr. Johnson was the team physician for the men’s and women’s wheelchair basketball teams for the USA delegation to the 2011 ParaPan Am Games in Guadalajara (Gold Medalists, men and women) and the 2012 Paralympic Games in London (Bronze Medalists, men). Here at the UT Health Austin Sports and Injury Clinic, Dr. Johnson and the team treat all athletes, including adaptive and disabled athletes and athletes with medical conditions or injuries that impact their ability to participate in sports. At the UT Health Austin Sports and Injury Clinic, every one of our medical professionals is dedicated to getting every athlete back in their game, whatever their game may be.
HEARTBURN AND ESOPHAGEAL DISORDERS CENTER A COMPREHENSIVE/MULTIDISCIPLINARY APPROACH TO TREATING GERD AND OTHER ESOPHAGEAL DISORDERS Heartburn is common. For many people, the symptoms of common heartburn are mild and/or intermittent. But GERD (Gastro-Esophageal Reflux Disease), a more serious condition that involves severe or daily heartburn and regurgitation, affects up to 20% of the U.S. population, which is nearly 40 million Americans. GERD is defined as esophageal damage and/or reflux affecting daily activities. Of those who suffer from GERD, many are unable to obtain complete relief from commonly prescribed or over-the-counter medications. Over time, chronic reflux can cause damage to the esophagus that can lead to trouble swallowing or even pre-cancerous conditions such as Barrett’s Esophagus. Directed by F. "Tripp" Buckley, M.D., the Heartburn and Esophageal Disorders Center takes a comprehensive/multidisciplinary approach to treating GERD, achalasia, Barrett’s Esophagus, complex hiatal hernias, and other esophageal disorders. With a strong partnership between the departments of surgery and medicine, the Center provides the convenience of diagnostic testing that can be completed in one visit, without requiring that the patient ever leave the clinic. Diagnostic modalities include high resolution esophageal motility testing, pH monitoring, specialized biopsy techniques, and radiologic assessment. Since it began in 2018, the Center has become a referral location for patients regionally, nationally, and internationally. Dr. Buckley was himself a patient with GERD and Barrett’s Esophagus, which significantly affected his quality of life. “In 2012 I began having symptoms of heartburn and regurgitation so severe that I was unable to sleep at night;” he says. “These are the same type of issues many of my patients experience. I underwent all of the diagnostic tests that we typically perform, and I eventually had surgery in 2013 and have to be followed for Barrett’s.” After Dr. Buckley’s personal experience in his battle against GERD and Barrett’s Esophagus, he decided to focus exclusively on helping others with heartburn and esophageal disorders. “I have great empathy for the suffering that our patients have experienced,” he says. “I know how scary surgery can be, but since I’ve undergone it myself I feel that I am able to better guide my patients through the process. The entire team here at UT Health Austin has the kind of experience that really can help make the entire process smoother from start to finish, and experience is important because successful surgical outcomes have been directly linked to experienced surgeons in high volume centers. I have now performed over 2,000 surgical procedures, and at UT Health Austin we are involved in over 200 cases a year. So far, we have already treated patients from 28 different US states, and a number of international locations, including Ireland, Georgia, Canada, Mexico and Guam, all of which makes us one of the busiest centers in the world.” Like every UT Health Austin clinician, Dr. Buckley believes that caring for each patient as a whole person is the best approach to treating the types of conditions he sees. “We do a multitude of standard stomach and esophagus procedures, as well as the entire spectrum of hiatal hernia repairs. We also do a number of newer procedures to treat GERD, one of them being the LINX® procedure, which uses a specialized implant that helps prevent gastric acid from pushing back up into the esophagus, and allows for easier swallowing,” he says. “But it’s important that we look at the patient as a whole person to determine exactly which type of treatment approach or operation is right for them. And as we train the next generation of surgeons, we work very hard to ensure that, in addition to developing outstanding technical skill, our students apply this patient-centered approach in the practices they will go on to create, and the work they will do for and with patients long into the future.”
F. Paul “Tripp” Buckley, MD Medical Director and Surgeon, UT Health Austin Heartburn & Esophageal Disorders Center
TWO BUSY YEARS: OUR EXPANDING CLINICAL CAPABILITIES
Rheumatology Clinic, Sports and Injury Clinic
Women’s Health Institute
Obstetrics/Gynecology, Complex Gynecology, Maternal Fetal Medicine, Gynecologic Oncology, Reproductive Endocrinology, Cancer Fertility Preservation
WorkLife (Walk-In Clinic, Occupational Health and Injury Clinic)
Travel Health Clinic
Mulva Clinic for the Neurosciences (Comprehensive Memory Clinic, Bipolar Clinic, Women’s Reproductive Mental Health, Multiple Sclerosis and Neuroimmunology, Neurosurgery, Back and Neck) Pain Center Laboratory - Imaging, X-ray, Ultrasound, Mammography, Bone Density
Advanced Imaging Services: Computed Tomography (CT), Positron Emission Tomography - Computed Tomography (PET/CT), Magnetic Resonance Imaging (MRI)
UT Health Austin Pediatric Neurosciences at Dell Children's (Comprehensive Pediatric Epilepsy Program, Comprehensive Headache Program, Comprehensive Neuropsychology Program, Comprehensive Neurosurgery Program
Comprehensive Pain Management Diagnostic X-Ray Center Heartburn and Esophageal Disorders Center LIVESTRONG Cancer Institutes (currently treating Gastrointestinal, Gynecologic, Head and Neck, Hematologic and Lung Cancers) Medical Specialties Clinic (Endocrinology, Gastroenterology, Infectious Disease, Dermatology) Primary Care Clinic Texas Center for Pediatric and Congenital Heart Disease (at Dell Children’s) UT Health Austin Pediatric Psychiatry at Dell Children's
COMING TO THE HEALTH TRANSFORMATION BUILDING (HTB) IN 2020 UT Health Austin Ambulatory Surgery Center: Scheduled to open in May 2020, the ~23,000 square foot UT Health Austin Ambulatory Surgery Center will be located on the first floor of the Health Transformation Building. The Center will consist of four regular operating rooms of 420 square feet, one larger operating room of 650 square feet that will accommodate larger equipment, eight Post-anesthesia Care Unit (PACU) bays, and 13 pre-operative and Phase II recovery rooms. It will have the capability to house patients overnight for “extended recovery” following selected procedures. The Center will be capable of providing a wide range of outpatient-eligible surgical services, as well as endoscopic gastroenterology procedures and pain management services. Particular emphasis is being placed on information technology (IT) system integration, physician involvement with the design of patient-centered work-flows and efficient operational processes.
Also coming in 2020: • UT Health Austin Mitchell and Shannon Wong Eye Institute • UT Health Austin Mulva Clinic for the Neurosciences New Adult Services, and an expanded Multiple Sclerosis and Neuroimmunology Clinic (currently seeing patient on the 9th Floor of HTB)
• UT Health Austin WorkLife Walk-In Clinic (currently seeing patient on the 9th Floor of HTB)