While children with potentially lifelong conditions are living longer than ever, they aren’t necessarily living better – with families often feeling short on hope and long on stress. Believing that health care systems can do better for these patients, UCSF specialists have established the Wellness Center for Youth With Chronic Conditions. As its medical director, pediatric rheumatologist Emily von Scheven, MD, MAS, explains, the center is dedicated to assessing and meeting the medical, emotional, social and creative needs of children and adolescents growing up with a broad range of disorders, including autism, diabetes, sickle cell disease, seizures and cancer. She describes how the center's team works to help patients discover and reach their wellness goals, offering them everything from fitness counseling and cooking classes to healing arts workshops and integrative therapies. Find out who may benefit, see images of the center’s kid-friendly spaces, understand the value of teaching pediatric patients to manage their own care as they approach adulthood, and learn about all the resources for both patients and providers on the center's website.
OK. Thanks so much, Virginia. Um, it's uh really nice to be here with my colleague, Sydney Gressel, and um I'm gonna turn this over to her in 2 seconds to give most of the presentation. But what we're gonna be talking about is a new center at UCSF that is a center specifically for kids with chronic medical conditions that was created to really help foster wellness for this group. And some of you might know me as a pediatric rheumatologist. Which is my main clinical focus, but through many, many years of taking care of kids with chronic rheumatologic conditions, it became pretty clear to me that the healthcare system that we live in and take care of patients in is really not very friendly or well suited for taking care of kids with chronic conditions. And um I was trying to build specialized programs for rheumatology patients and realized that we really should be banding together across all the subspecialties and thinking about How we can do this for kids with all kinds of chronic diseases. So this center that we're gonna be talking to you about really came out of that notion that we can do better than we are doing right now when it comes to how we're taking care of kids with chronic conditions, and that we really need to sort of try some new ways and, and, and bring some creativity, um, to, to how we think about changing how we take care of these kids. So this center that, um, Sydney's gonna describe for you is really Um, an effort to think about how can we do things different for these kids with a focus on, on wellness. So, Sydney, I'm gonna pass it over to you. Thank you so much. I really appreciate the uh invitation to be here today. I'll go ahead and share my screen and get started. Everybody able to see those slides? So once again, we are here from the Wellness Center for Youth with chronic conditions. Our team has been growing over this last year. You just heard from Dr. Emily von Schaben. She is our medical director and has been working on the creation of the clinic for 9 years now. Her other role as the chief of the pediatric rheumatology department. I'm the nurse practitioner with the Wellness Center. We have a social worker named Gina Kostler. Bhupendra Nahal is our program manager and has been working alongside Doctor Vonnchaben for all these years in the creation of the clinic. Doctor Amanda Bryson is our adolescent medicine physicians. Selina De Borja works with sports medicine and runs our fitness referrals. Brie Phillips is our integrative dietitian. Leslie Montaraz is our child life specialist, and then we are in the process of hiring a physical therapist at this time to join the team. We have a vision of creating a lifetime of wellness for children and adolescents who are growing up with chronic medical conditions. We've got this shift to a long life course perspective, because in the past, uh, children with chronic illnesses didn't live as long or they didn't live as well. But now that survival has increased for these patients, there's also new morbidities that have increased as or have emerged as well. So, uh, patients are now living longer, but then also developing co-existing conditions like hypertension, heart disease, um, diabetes, and so forth. And so now we're trying to consider prevention across the lifespan as well for these patients so that they can live as well as possible as long as possible. We started off with the discovery process of interviewing many hundreds of patients and families and caregivers, providers, and people in the landscape, and a number of themes emerged from that research about what it is to live with a chronic illness or to care for a family member who's got a chronic condition. And some of the themes included mastering care and coping and stri striving for normalcy, what it is to interact with the healthcare system ongoingly, and then thinking about transitions from pediatric and ultimately into adult care and um what it takes to look ahead to the future. And then we use human design methodology to design the clinic so that we are a point of connection for these families. Families wanted to be acknowledged. We hope to provide respite amidst the chaos of living with a chronic condition. We're here to be transparent and easily accessible, and as much as possible to be an ally to these patients and families and help to relieve some of the burden of what it is to have a chronic condition. The emphasis on wellness is the focus on what it means to be comfortable and happy and at peace, and to live well, despite having a chronic condition. One of the kinds of things that we can do now and in the future so that we can have uh improved well-being as lives unfold. We know that growing up with a chronic condition can be difficult and stressful for patients and families, oftentimes with a lot of unknowns and a lot of ongoing stressors. And so we're asking this existential question of what does it mean to have wellness and illness at the same time. For many of our patients, they have ongoing or maybe even incurable medical conditions that will follow them into adulthood. This is a little overview of how our wellness program works. We start off with this customized discovery process and learn about our patients in the context of their life, understand who they are beyond their medical conditions, and, uh, go through the process of figuring out areas that they would like to focus on, things that they would like more support with, things that they're struggling with, uh, and we come up with some customized goals, things that they want to focus on in their work with. Us. And then we come up with a customized plan of additional support services, um, next action items and steps they can take to help achieve those goals. And then we follow them ongoingly and potentially for many years, these patients meet us in their youth, and then they can follow us until they graduate into the adult healthcare system. And so we continually refine our approach and help them achieve their goals and modify the approaches needed based on what's happening in their life. We've created a number of um resources and materials for families. We send out a welcome packet ahead of time before patients come see us, and this is what the welcome packet looks like. It includes some different prompts, um, like a wellness care map, they can fill out who is their support team and, um, who are the people. In their life who helped them, uh, get through their life and handle their stresses and challenges. We have a vision map of things that they're striving for, what they hope for, what they'd like to work on. And so these are some interactive worksheets to sort of get them started and thinking about what wellness might mean in their life. We have the wellness conversation, which is really the heart of our program. It's a 75 minute long visit with myself as the nurse practitioner and our social worker. We know from these families that they want us to know them well, but they also get tired and burned out from having to tell their story over and over. So we thought we would make this first visit be with uh more members of the team so that we can get to know them and then take it from there, following up either with myself or the social worker as needed. But we have lots of talking. It's about conversation and rapport building. There's no physical exam. Patients keep their clothes on. We're not checking vital signs. This is really a non-medical visit in a lot of ways, even though, of course, we talk about their medical conditions. And We talk about how life is going and what's happening beyond their physical health, but also how are they doing emotionally and socially and what's happening at school and what's going on with the family system? How are things going at the house. We go through that pre-work, if they've filled out the packets ahead of time, and we come up with a couple of different goals, things that they'd like to work on, and then we develop a customized plan to help reach those goals, referring them to additional services and other parts of our program. We tend to follow up with patients about every 3 months to give them time to take action on the things that we've discussed. Some patients come back to see us sooner, and then other patients decide to space it out a little bit more if they have multiple medical visits happening and they're just burned out with healthcare. We're here to be an extra layer of support but not add additional burden to any patients. The emphasis with us is on conversation and building relationship. We're here to understand the patient in the context of their whole life and to prioritize the areas of wellness that they would like to work on. We come up with goals and re-evaluate those goals as needed at future visits, and we come up with that customized plan to help them. Achieve their goals. Really, this is supposed to feel very different in quality, um, than what a typical medical visit feels like. Patients come to us and we're really interested in them as a whole person and understanding how things are going in their whole life and not just with their medical care. We're looking far beyond their scans and their labs and Um, you know, their medications and their infusions and all of the different metrics and numbers that our doctor just and, um, nurse practitioners typically have to look at. We're really trying to understand how their whole life is going. And so it uh is an opportunity for them to connect and to share with us of who they are and what matters most to them in their life, and we want them to leave us feeling excited, curious, maybe even hopeful or like they've got a sense of accomplishment, like they're working on something for their own well-being. This is the wheel of the eight domains of wellness that includes the physical, occupational, intellectual, social, emotional, environmental, spiritual, and financial aspects of a person's life, and surrounding this cute little infographic is what we call health and life skills, the kinds of uh skills that lead to a more autonomy and independence as patients learn how to take care of themselves and ultimately age out towards the adult side of medicine. We have a menu with a number of different clinical services, as well as some non-clinical community events. We have the wellness consultation, which I just described. We have ongoing emotional and social support for these patients and families, including sibling and parent support. We have the option for a child life consultation. Child life really um specializing in helping children cope, not just with living with chronic illness, but all of the sort of social and emotional impacts of having a chronic condition and helping them cope and do well in the different areas of their life beyond just their medical care. We have a fitness program as part of our work, where patients can have a customized uh fitness consultation and have an exercise prescription be made for them. For some of our patients, they're significantly deconditioned from long hospitalization. Other patients were once upon a time great athletes who could no play their favorite sports because of their health. Other patients just would benefit from more movement, for mood support or for their overall wellness. Some patients could use more fitness for weight loss. Whatever their fitness goals are, they meet with a sports medicine physician and then come up with a customized plan to incorporate movement in this healthy way. We have an integrated nutritionist who works with patients. Many of our patients are interested in following specialty diets, whether it's a renal diet or an anti-inflammatory diet for patients who have a lot of chronic pain. Some patients are interested in weight gain or weight loss. Other families are interested in how to safely incorporate supplements into their child's uh nutrition. And, uh, we're trying to think about food as medicine here, rather than just a simple calories in and calories out or thinking about how nutrition may be one of the things that really upholds a person's well-being. We have an adolescent medicine partnership where patients can receive their sexual and reproductive health care, including complex contraception or any concerns around um menstrual issues. We also provide customized sex education for patients who may have anatomical differences if somebody's got uh a suprapubic catheter or an ostomy, what's it like to have safe and healthy intimacy in a body that may be different from their healthy age peers? We also offer a transition program, and this is for patients as they become teenagers and are um going towards adulthood. What are the kinds of skills and information that they will need so that they know how to take care of themselves and safely navigate the healthcare system on the other side. We offer non-clinical offerings, um, including cooking classes, music jam sessions, healing arts workshops, which are kind of like writing workshops, parent discussion groups, and more. And then we are now working on creating some partnerships with other groups like the OSHA Center, where we're designing a traditional Chinese, um, medicine um group medical encounter. We're working on group medical visits that will function somewhat like support groups for patients who can connect with other patients in a shared medical encounter and then hope to offer more navigation services in the future. This is more about the patient and family support outside of our clinical offerings. These are open to anyone, even if patients haven't come to our clinic for one of those wellness conversations. And so we've got kids cooking classes that are offered in a four-week series where they work with a, a chef who's offering instruction online. And they're cooking from the comfort of their own home, but they're connecting with other kids similar in age, making healthy, nutritious meals. We've also offered a couple of one-off cooking sessions, including a dumpling making class for the Lunar New Year this year, as well as a Valentine's Day desserts class. The Community parenting discussion groups are great. They're um sort of a Q&A panel from parents who have experience navigating the healthcare system with kids who have chronic conditions, and they're offering support and resource and information to parents who may be newer to um having a child with a chronic condition. And these are offered monthly throughout the year, uh, and it's an opportunity for families to build community and to learn from the wisdom of other families and parents who have, um, walked in similar, um, shoes or on a similar path with their own children. We've got an expressive healing arts workshop. It's a writing workshop led by a woman who's both a therapist and an author. And these are offered for parents as well as uh teens and young adults. And then we just started offering these music sessions offered by a music therapist. They're right now online, but in the future we may have them in person once we're in our full-time clinic space, and this is a place for people to be expressive and playful with musical instruments from their home. On the topic of transition, there are actually several different aspects to transition. Um, but there's something called the um Go transition group, and they focus on what they call the six core elements of healthcare transition. As you can see they're listed here. The piece that we're really focusing on is transition readiness, the kind of self-care skills, disease self-management, and um education and things that patients will need to know as they approach adulthood. The transfer portion where you're actually connecting with an adult provider and switching over your care, that will still be in the hands of the primary care physician or the primary team. So transfer planning, which includes disease-specific anticipatory guidance and education, the actual timing of transfer, selection of the new adult clinicians, or any kind of Legal issues around supported decision making. All of that stays with the PCP or the primary subspecialist, and then the transfer of care, including the actual handoff, uh, the warm handoff with current medical information, communication and coordination between the pediatric and the adult side of medicine, that remains on the primary team or the PCP. The piece that we're focusing on is transition readiness. We use a tool called the track assessment, and this is where we talk with patients about what it is to manage their medications and keep appointments, track their healthcare issues, communicate with healthcare providers in MyChart. Um, we assess their motivation and understanding and confidence, and then their skill levels in handling this stuff for themselves. This helps us identify areas where patients need extra education or support, and we fill in some of those gaps, providing that education, and sometimes we help them just come up with a list of questions that they need to take back to their primary team so that they can get the information they need to help take care of themselves as they get older. This is a little bit about who we serve. Some uh examples, but far from an exhaustive list of the kinds of patients we see are children who are living with conditions that are expected to last for a year or longer, and some examples are listed here on the screen. Including neurodevelopmental um diagnosis such as autism and ADHD. But this is, like I said, far from an exhaustive list. We see patients with every different um subspecialty, um, and oftentimes patients are followed by multiple subspecialists and they can all come to see us for extra support. These are some of the uh community partnerships that we have been working with over the last several years. We have our own patient family advisory council, and we've been working with community organizations including SF Support for Families, CCS or California Children's Services, as well as Family Resource navigators in the East Bay. This is more about the research and the work that led up to the design of the clinic. As I mentioned, Doctor Vonnhaven and her team interviewed many different patients and caregivers and people in the landscape to come up with the research questions about what matters most to these patients, who are these families, what do they struggle with, and what are their needs. Um, some of the themes again were around navigating the health care system and communicating with providers. The social, emotional, and family impact of having a chronic condition or caring for a child with a chronic condition, the relationship between patients and parents and providers, ongoing concerns about insurance and healthcare coverages, and worry over whether or not services will be paid for, and then, of course, the transition to independence as patients go through their higher education and move out of their house and figure out employment while they have a chronic condition. Number one priority over and over through the research was hope. Interestingly enough for these families who are too stressed out, often are too overwhelmed to even think about what lies ahead. Hope was at the core of what kept them going through their experience. And so we have this ongoing hope study and have published a couple of studies about the role that hope plays in the lives of these patients and their families. All of this research is available on our website, which I'll share with you in just a moment. This is our new clinic. It's a brand new space. It's gorgeous and it's been built for us in the Gateway Medical Building. It's going to be on the 4th floor when you exit the elevators immediately to the left-hand side. We're, the space is finished now. We're just waiting for some of the zoning, um, things to go through so that we can actually start seeing patients. in this space and that should happen next month, um, April 2025. We've got um a beautiful gym inside as you can see where this climbing wall and these swings and a bunch of physical therapy and rehab equipment lie. We've got community rooms where we can host classes and discussions and activities and Uh, group fitness and so forth. These are some of the exam rooms as well as the waiting areas that have these 3D interactive spaces. There's a digital waterfall inside of the clinic that's responsive to touch, and um all of the clinic is set up to feel very differently than a typical medical office. There's a lot of these kind of curved. Hallways and little nooks and interactive spaces that patients can sort of play with and relax and we've got a multi-sensory room, we've got rooms for occupational therapy and uh feeding support and things like that. And we will share this space with the SA Center, which is the pediatric pain and palliative care outpatient team, as well as outpatient rehab. So the three of us will be sharing this space. We're really excited to open up in here. This is our website, youth Wellness. UCSF.edu. There's a ton of resources on here for patients, for providers, for families, um, all of the research that we've published is available here. All of our, um, non-clinical offerings, registration for cooking classes and writing workshops, all of that is here, as well as resource. is about how to have your own wellness conversations with your patients. We've got a bunch of uh provider supports and tool kits and um information about motivational interviewing and so forth. So definitely check out our website and there will be continual new updated information here about all of our different offerings as they continue to evolve. The kinds of patients to refer to us, any child who's got a chronic condition, anybody who's adjusting to a new medical diagnosis, anybody who could use extra support with coping, those who are experiencing isolation, we see a lot of isolation in the patients who come to us, either because they've missed a lot of school due to illness, or some of them are doing home hospital care. A lot of them have some social differences and developmental differences that um keep them. A pretty isolated and, and walking a solitary path because they're feeling quite different from some of their peers. Patients who are coming to us interested in being more physically active, or those who would think of food as medicine and benefit from our integrated nutrition program. Anybody who's in need of transition support, and we start our transition work with patients as early as 13 or 14 years of age. And that becomes something we check in with them about on a regular basis all through their teen years and into a young adulthood when they finally transition to the adult world. And then we're open to patients who receive their specialty care at UCSF or outside of the UCSF system, including patients from Stanford, patient from Sutter facilities, and patients from Kaiser as well. So, uh, we really see everybody in the extended Bay Area and in many cases beyond the Bay Area, patients who are living in Fresno or Reading or Mammoth if they receive their specialty care with us or outside of UC. This is what our apex referral looks like if you're on Epic or in the Apex system. Anybody who searches the term wellness or chronic or youth will open up our ambulatory referral order set. This is a glimpse of what it looks like. And then this is more of what our intake conversation looks like. You'll see there are a number of different goals that you can check things like building hope and resilience, emotional social support, whether you want to help your patients foster adherence to their medical care, if you're interested in transition support, coping, parent and Sibling support. And we've actually just updated our um order to also include child life as well. So this is actually slightly changed um from what it was in the past, but if you'd like for uh patients to be able to work with Child Life as well, you could let us know that in the order. For referrals outside of Apex, you can find that order form on our website. Uh, there's a, a referral form that can be downloaded there. You could contact us through our phone number or fax machine. Uh, the referral form is what it looks like on the right side of the screen here. You'll always want to tell us the reason for the referral. Let us know a little bit of what's going on with your patient and why you think they would benefit from coming to see us. And then, um, patients can also self-refer and that information is on our website and we will um we've got a scheduler who goes through uh the process of checking with insurance to make sure the visits are authorized and once that's gone through, then they go ahead and reach out and schedule with the patient. So we're starting something that is new in healthcare. Historically, any kind of wellness offerings have existed outside of the medical system and have really only been available to wealthy folks who can afford that outside of their healthcare. And what we're trying to do is be integrated with the healthcare system. This is new and different, really doesn't exist anywhere in the country at this point, to be part of the healthcare system, part of the Benioff Children's Hospital, um, here at Mission Bay. And in the future, we will hope to open a clinic at Children's Hospital Oakland as well. But we're a special wellness program for children and youth who have chronicle. chronic medical conditions and, uh, and their families providing a sort of wrap-around support for these patients and really trying to bring wellness into part of their medical care because these things shouldn't be separate for these patients. And then I just want to mention that we offer in person as well as telehealth services and programs, patients. Can absolutely see us through virtual health care. Many patients have issues with transportation or with chronic pain that makes travel very difficult, or they live far from the city and the city itself is not accessible. So for especially those patients who live far away or have other competing, um, issues that make it difficult to come to us, telehealth is always, uh, an option. Um, I mentioned the referring provider tip sheet. This is on our website. We've got this whole tool kit for providers. So if you'd like to learn more or how to start to have these conversations with your patients yourself, all that information is available online.
