Hello, everyone. We would like to welcome you to the ADA's Interest Group webinar presented today by the Diabetes Technology Interest Group Leadership Team. Today's webinar will be facilitated by Dr. Laia Eklisbor. Dr. Eklisbor is a pediatric endocrinologist and an assistant professor of pediatrics at the University of California, San Francisco. Her research is focused on the use of technology in children and adolescents with type 1 diabetes. Since her training at Massachusetts General Hospital, Boston, and then at Staffordshire University, she has focused on testing and developing novel diabetes technologies, including continuous glucose monitors and automated insulin delivery systems, and has been an investigator on multiple NIH, JDRF, and industry-funded studies. She is currently an advisor on the ADA's Diabetes Technology Interest Group Leadership Team. Thank you, Jennifer, for the introduction. Thank you again, Julia and Persis, for agreeing to present at this webinar. I'm very excited about this topic and today's webinar. But before I introduce you, I want to share two slides about ADA's event and upcoming webinars. ADA's Making Diabetes Technology Work program is now offering updated modules on the use of diabetes technology in the clinic. You can register via the link that's in the chat. And this table has the list of upcoming webinars that you can register for these live professional webinars through the link in the chat. So Dr. Julia Blanchett is a nurse scientist and diabetes care and education specialist at the University Hospital's Cleveland Medical Center and an assistant professor of medicine at Case Western Reserve University. She completed the ADCS-CBD-CE postdoctoral fellowship in integrated diabetes management at the University of Utah College of Nursing in 2021. As a diabetes care and education specialist, her expertise is diabetes technology and the transition from pediatric to adult diabetes care. Her research interests include diabetes self-management during young adulthood and financial and health insurance literacy. She recently received over $2 million in funding from Helmsley Trust to lead a three-year project with a diabetes link to create a financial and health insurance literacy toolkit for young adults with diabetes. She is currently a member of the ADA Youth Strategy Committee. Dr. Persis Kamserat is a licensed clinical psychologist and certified diabetes care and education specialist in the pediatric, adolescent, and young adult section of the Joslin Diabetes Center. She is also an assistant investigator in the section on clinical behavioral outcomes research at the Joslin Diabetes Center as well as an instructor of psychology at Harvard Medical School in Boston, Massachusetts. She provides individual and family therapy to children, adults, and young adults with diabetes with a special interest in coping skills and diabetes education. Her research focuses on identifying challenges to diabetes care and acceptance and improving psychological outcomes through enhancing illness identity and diabetes technology use. She has a special interest in qualitative and mixed method research to amplify the voices of young people living with diabetes. She is currently an advisor on the ADA Behavioral Medicine and Psychology Interest Group Leadership Team. Thank you, Julia and Persis. Before we start this webinar and hear your wonderful talk on this topic, I want to say I have heard from you in previous presentations and our meeting. You both live with type 1 diabetes and you use technology. Would you be able to share your personal experience with us about the transition of care and what made you interested in this field? I think Julia, you can go ahead and start. Yeah, sure. So I'll try to be quick. So excited to be here today. Thank you for the introduction. So I've lived with type 1 diabetes since I was seven years old and that was in year 1999. I started an insulin pump within a year of diagnosis and I've used diabetes technology my whole life. And so when I went into the healthcare profession into nursing and diabetes education, I, you know, I embrace all technology. I love trying new technologies so I can better help my patients. But during my clinical experiences and my experiences working as a nurse and diabetes care and education specialist, I worked with a lot of young adults with diabetes at diabetes camp. And I learned that not all adults have a lot of psychosocial support. They have a lot of psychosocial barriers during that transition from pediatric to adult care. And then I personally experienced my own barriers during that time where I had not a smooth transition at all to my adult provider. I loved my Peds set up and then I was in another state, very lost getting to my first adult appointment and it didn't go very well. So that really opened my eyes to the problems and the transition from pediatric to adult care. So now I'm interested in all of the above and excited to be here today. Thank you. Persis. Yeah, I had a really similar experience. I've lived with type one diabetes since I was 11 years old, but I don't want to tell you what year that was. And I've been on technology since the year after I was diagnosed. And so it's been well over 20 years now. And though I've had great experiences with technology, I've certainly hit a ton of barriers too, even as recently as a couple of days ago when I was texting Julia about how frustrated I was. I personally found that adolescence and young adulthood were the hardest times of diabetes for me. And it was really challenging to get through despite all of the great support that I had. And I also, like Julia, did not have a seamless transition into adult care. So it was really important to me that I was able to use my experience to help others not have the same problems. All right, so here are disclosures. And today we will first introduce you to adolescence and emerging adulthood. We will then define technology-specific barriers to care and the barriers to technology use in adolescence and emerging adulthood. You'll see AYAs used throughout this presentation. That stands for adolescents and young adults. And then we'll talk about opportunities to facilitate sustained technologies, what you guys can do in practice to help people use technology with less barriers. And then we will open up the floor for discussion if we have time. Sorry, I was muted. We will try very hard to have time. We may need to be rushed along. So we'll begin just by defining the group that we're talking about, adolescence and young adults. So there are many challenges to this age range, and I'm sure many of you know this already, because we've all experienced it ourselves in our own lives. There are many changes and transitions happening during this time. And there's been decades worth of data on the challenges of diabetes in adolescents. And more recently, emerging adulthood has come into the spotlight. And the experience of diabetes in adolescents, I think, is so important in what emerging adulthood will look like for them. Yeah, and then during emerging adulthood, this is kind of the developmental phase. Between pediatrics and adulthood. So you'll hear that term as well. It's, Arnett is the psychologist that really worked on looking at that theory. And it's the time of gaining independence, getting one off their feet. And there's a lot to navigate during that time, in general, for like the general emerging adult, but then also those with diabetes. Right. So this slide on the screen. Sorry, can you go back? Sorry. Yeah. As I said before, this is a time when people are going through these multiple rapid changes. And more specifically, we are talking about starting in adolescence. We're going through physical growth, cognitive development, emotional changes, social pressures, and more risk-taking behaviors. And then as adolescents age, we also get into changes in the environment, especially in young adulthood. So people moving to work, moving to school, moving to work, so people moving out of the house, more financial responsibility, changing roles and expectations. And perhaps most relevant to diabetes care, as Julie and I just mentioned in our own experiences, is that transition from in healthcare services, from pediatric to adult care. And of course, all of this happens while responsibility for diabetes management continues to increase. Yeah. So there's, I kind of talked about this before, but there's a lot of competing demands that affect the young adult's ability and motivation to engage in diabetes care. So you have diabetes in the middle, and then you have all of these different pieces around it, like balancing one's social life and peer pressure, exploring one's identity and learning about oneself during this period of exploration, balancing work demands, balancing any educational or school demands, family obligations, and then also taking on finances and health insurance for the first time. And so this is, you know, managing diabetes can conflict then with the typical developmental path. And you're probably all very familiar with this graph. But what we wanted to point out here was that in this most recent analysis of type 1 diabetes exchange data, what we see here is that in the more recent years, that blue line of 2016 to 2018, despite the fact that there is more technology available to people, in this adolescent and emerging adult age group, A1c really sharply increases, and it remains higher than all other age groups across the country. And so this is higher than all other age groups across the lifespan. So I just wanted to quickly highlight this. So as you can see, in randomized controlled trials, adolescents and young adults with type 1 diabetes do have some decrease in A1c by utilizing continuous glucose monitoring. But when you get to the real world, although this is a pretty small data set that I'm talking about here, there is no real clinically significant impact on A1c. But I wanted to highlight this because that doesn't mean that technology isn't important or helpful during this time period. So we know that technology can decrease fear of hypoglycemia during this time period for young adults as they're trying to transition to independence. And we know that it can also decrease, in some cases decrease, but also maybe increase diabetes burden. It can also make your life a lot easier if you're doing something like clinicals, like when I was in nursing school, seeing my blood sugar really helped me navigate adapting to that new lifestyle. So yeah. And if we're talking about benefits and challenges, there's a ton of data out there on this already. The data suggested that diabetes technologies can improve glycemic outcomes and increase self-management behaviors and improve quality of life, all great things. But the fact remains that it's technology, right? All new technology comes with its own challenges because nothing's perfect. And it still requires effort, attention, and acceptance from the user in order to actually get these benefits. So in this presentation, as we start to review some of the major barriers that do come up in technology use for this age group, we wanted to actually spell out and define barriers to care. So we will be focusing on the context of living with technology. This definition on the screen is based on work by Valenzuela on barriers to accessing diabetes care. So in the context of device use, barriers to care are going to be the issues, dynamics, or circumstances that obstruct an AYA's ability to sustain use of their diabetes technologies or to use those devices to their full capabilities. And of course, as we go through barriers, they are barriers for a reason, right? If a person is not able to resolve barriers to technology, this may result in poor glycemic and psychosocial outcomes, as well as discontinuation of the device. We'll also be discussing barriers to added benefit. So what this means is that the perception of technology benefits needs to outweigh the perception of burden of actually wearing that device. Like I know for me as a person with diabetes, I don't want to have to choose between the burdens of doing manual care and the burdens of technology. I want technology to actually make my life with diabetes better. I want it to be easier. I want to be healthier. I want to feel more confident in what I'm doing, and I want my technology to help me do that. Now though research does describe some barriers as non-modifiable, the term in and of itself I'm not a big fan of. So what we're going to aim to do in this presentation is discuss all of the different types of barriers that come up along with opportunities to work around them. I realize we can't necessarily change everything, but maybe we can adjust and find our way through. And Julia is going to begin with talking about what are system level barriers and how do they impact care. Awesome. Yeah. So some of these system level barriers, like we'll start with financial barriers, actually can impact one's perception of how useful devices are because they can become so burdensome that one may not continue using devices. So first we have the one that I love talking about the most, which is the cost of care and limited health insurance coverage. And so this is really where a majority of my research is, is understanding how the cost of care and not understanding health insurance or low health insurance literacy can really impede access to technology and increase diabetes distress and increased stress level overall during emerging adulthood. And so emerging adults also are more prone to have insurance in the United States that is has higher out of pocket costs due to the lower cost of the insurance premiums. And then adults, young adult communities are also more likely to have multiple insurance coverage or sorry, multiple insurance plans at least once a year. So that's called churning. So they go from one plan to another. That's because young adults go from job to job a lot of times, or they may not have coverage or they may be in school and, you know, going on and off of school plan, parents plan, however it works. So that can all negatively impact sustained device use. And then there's those that are trying to transition to financial independence or independence with their own health insurance and costs. And people actually feel really guilty. Even if they have parental support, they may feel like a burden asking for support towards those supplies or towards getting what they need. And, and that's, that can also negatively impact one sustained use. And so then we have what I call logistical barriers. So first is if you're changing insurance plans a lot, like many do during young adulthood, it's really confusing. So especially for continuous glucose monitors, do I send it to pharmacy or DME? If you're changing plans very frequently, that may change frequently. It's also which pharmacy? Is it mail order pharmacy? All of these different questions, because the process has so many steps and can differ based on the plant can become a big logistical challenge. And then also on that note is that a lot of young adults have lapses in healthcare. Like they're not seeing a diabetes provider three to four times a year, like a lot oftentimes happens in pediatrics, if they're, if they're, you know, doing what the standard of care is. So that can also create issues getting prescriptions and then getting everything to the right place. I already touched on low health insurance literacy levels a little bit, but, you know, health insurance literacy is the ability and the degree to which one is able to choose and enroll in a health insurance plan that is best for their health and financial situation. Most young adults are not able to do this. Most adults are not able to do this in the United States. When you have type one diabetes or type two diabetes, this really complicates how you utilize healthcare and then how you then access your diabetes technology. And then lastly, we have frequent address changes. This group moves around a lot. There's a lot of transition, a lot of moving parts. They may not have the same address and then figuring out how to get your supplies or your medications shipped to your house can become an issue as well. Okay. So now we have racial and ethnic disparities, and this is, you know, we cannot change somebody's race or ethnicity, but we need to be better at acknowledging our biases and making sure that we are offering our diabetes population, the same, the same offerings, the same technology offerings and the support that is needed to stay on these devices. And so there are lower rates of insulin pump and continuous glucose monitoring use and non-Hispanic black young adults compared to those who are white even after adjusting for socioeconomic status and other sociodemographic characteristics. So this is a racial bias. And then there's lower socioeconomic status is associated with with lower insulin pump uptake as well. And so those who have lower resources are then less likely to utilize insulin pumps. And that is often due to provider insurance bias. And then there's all the other social determinants of health that impact one's sustained use on technology. So it's just remember if somebody doesn't have, doesn't have, you know, secure access to food and isn't able to get what they need, or they're not living in a safe environment, they are not likely to be focusing on getting their continuous glucose monitor as much as focusing on those other needs. And so just making sure that you're assessing for social determinants and where the barriers are, and then helping provide support services to those patients is important and helping them then use technology as well. Absolutely. yeah. And then in thinking about these systemic issues, this actually leads really well into our next topic, another major challenge for our adolescents and young adults. So how are providers further contributing to AYA's barriers to technology use? Yeah, so a lot of providers don't feel comfortable or knowledgeable enough about all of this technology that's coming out so quickly. Everyone is so busy in clinic right now and it is really hard to keep up with everything and so that's why we have webinars like this to help you kind of stay on top of the technology and it's really hard, right? So a provider doesn't understand the benefits of the technology, it's hard to then explain it to a young adult who they may not be familiar with working with as well and so then we also have to do a better job trying to help support providers work with young adults and understanding their developmental needs. And so I already talked about bias a little bit, but provider bias doesn't just impact technology uptake, but it can also impact decisions to transition to new technologies. And so providers are more likely to offer the newest and greatest technologies to individuals who are privately insured, have higher education levels, are younger age and then are more technologically savvy. And of course the younger age and more technologically savvy, it's a bias, we would assume that young adults are younger age obviously and then more tech savvy, but some may not have high tech literacy skills. So just keep that in mind and be cognizant of all of these biases and make sure that you are offering the new technology to everyone and checking insurance coverage for everyone and not just those that may have this really amazing private insurance plan. And so in the clinical setting, 72% of Hispanic and 28% of non-Hispanic Black young adults have reported never even being offered technology prescriptions. We need to do better than that. There is racial, ethnic, media and implicit bias present in over a third of diabetes providers in a national sample in the United States, and this was of pediatric and adult endocrinologists, so we really need to do better. Racially or ethnically diverse young adults report limited discussion on device options and they don't feel like they're able, they can't have the shared decision making process with providers to figure out what technology is best and to keep using it. And so all technology has drawbacks as well, and so Persis is going to focus on some of the device specific barriers reported in the adolescent young adult population. Great. Thanks, Julia. So, yes, let's talk about technology drawbacks. So the first one we're going to go over is device wearability. So when I say device wearability, it refers specifically to the physical experience of wearing something on the body. Now, these are things that we have heard across the lifespan, of course, but things like pain or discomfort or skin reactions from inserting a device or wearing an adhesive, these are common concerns. We also hear from people about size and appearance of devices as potential barriers. This, I think, is especially important for this age group of adolescents and young adults because size and appearance of something on the body matters. It matters because they're growing, it matters because they're around people, it matters because they're active, and if the devices are perceived to interfere with daily life or activities or cause any social stigma, this can be a big cause for concern for AYAs. Now, another significant barrier from devices is alarm fatigue. I'm sure you've all heard this term before, but to just spell it out, alarm fatigue is when we talk about people experiencing too many alerts or alerts that feel excessive or disruptive or disarming in some way, and then they just check out on diabetes. They become numb to the sounds and they just completely disengage with their systems. I know for me, I've seen this before in some of my visits where I will be speaking with a patient and I literally hear pump alarms going off in the background and they just keep talking like nothing has happened, and the alarm fatigue is so real in that moment. AYAs and parents also report device alarms affect their sleep. Importantly, in this age group, adolescent alarm fatigue can lead to worry and conflict with parents because parents feel the need to step in. They know that something has gone wrong and it's not being taken care of, and in that excessive worry and conflict, this also affects the transition to more independent diabetes care as they grow into emerging adulthood. Another big barrier we hear about is technological difficulties, and to be clear, some tech issues may not be related to user error. They're just devices. All devices have issues at times. So when we think about things like signal loss or inaccuracy, unnecessary alerts or unplanned alerts, all of these cause a ton of frustration for our adolescents and young adults, and for me too. But importantly, the reason that these difficulties are so relevant to device use is because they all require increased management behaviors to compensate for them. How do you stop any of these things? You don't just wait them out. You have to address them, and because of these extra management behaviors that people need to do to compensate for the issue, this is what leads to increased frustration. Leah, can you go back? Awesome. So data and download overload can also be a major barrier here. AYs and parents have all expressed challenges with making sense of real-time data, actually responding to the real-time data, downloading and reviewing it, and the negative emotional reactions that come up just from seeing numbers constantly. It can be very overwhelming to feel like numbers are constantly thrown in your face, and in some cases to have a second person watching those numbers and commenting on them. It feels like a grade, though we often tell people it shouldn't. AYs also have other priorities while still adjusting to full independence and time management, so that data just becomes an added burden for them. It does not, as I mentioned before, add benefit if it feels like it overwhelms people. Perceptions of devices are also really important in whether AYs will start or continue using devices. What we have found, or when I say we, I mean research, but what research has found is that AYs will likely get the most benefit out of their devices if they trust them and trust that they're working correctly. If they have realistic expectations of what that device can do for them, and in realistic expectations, consider that it's going to be useful to them and easy for them to use in their lives. And finally, that they perceive individualized benefits from their devices. I've starred the term individualized because I think it's really important for this particular age group to feel understood by their providers. They're always talking about, like, no one understands, that's why the social circle is so important. So it needs to be unique to them, the benefits need to be unique to them. And it also brings up the point that in this age group, because they are transitioning to more responsibility, parent and AYA expectations and perceived benefits may not match up. So it's really important when we discuss it to know that both perceptions are met. So this is a really hard group to reach. So Persis, what are some of the developmental considerations that we must take into account in practice? Yeah, so let's start with the burden of physical wear. This is a little different than what I was presenting before on wearability, because this relates to more the emotional burden of having a device on the body. So in separate studies of adolescents and adults in the Type 1 Diabetes Exchange, the most frequently endorsed modifiable barriers to device uptake were the hassle of wearing devices and disliking a device on the body. So you can see, like, what comes up most often is just the physicality of, like, coming to terms with something stuck on you. And there may also be added burden if AYAs feel that they can't engage in their typical activities because they have something on them. This sort of blends into the next barrier that I'm going over in body image. Now, body image, I think, is really relevant to this particular group. In those previous Type 1 Exchange studies I mentioned before, adolescents and adults both described disliking how the device looks on their body as a major concern. So if we're thinking about body image concerns, especially in adolescents, we went over how they're trying so hard to fit in with peers. So perhaps body image concerns include things like feeling different from other people or drawing negative attention from others and just wearing something on them as a physical reminder of having diabetes, which should people feel negatively about having diabetes in general, that device brings on more negative emotions. So if fitting in is a priority in adolescents and young adulthood, that means technology could take away from that. So despite using a device to make diabetes care easier or more seamless, some AYA may view the visibility of the device as counter to the normalcy that it was meant to provide to them. There's also data on the link between the underlying psychological challenges between diabetes and technology. So when I say psychological challenges, I'm referring specifically to more depression and anxiety. And results have been mixed, and there's no causal link between one leading to the other, but technology and mood are certainly related. So for example, devices can relieve some diabetes-specific anxiety for some people, but they could increase diabetes-specific anxiety around glucose data for other people. But the take-home here is that the presence of these psychological challenges can negatively affect how people engage with technology. Now another big topic for this age group is stigma and negative attention. So AYAs have endorsed worrying about peer reactions, feeling embarrassed, and not wanting others to notice or ask questions about their devices. And we refer to this as diabetes social stigma. Diabetes social stigma can negatively affect acceptance of technologies, because as I said before, this is an age group that is trying to balance a lot of things, trying to fit in with others and move forward in their lives. And it can feel like diabetes might be holding them back in some cases. Now I had given, maybe some of you remember, a similar talk to this one at ADA last year. And someone came up to me afterwards and brought up this topic about transferring responsibility between parents and adolescents. And I'm so grateful that they brought it up, because it was such a fantastic point. So AYAs have referred to challenges with taking on more responsibility from their parents. When the parents transfer responsibility prematurely, before their child is actually ready to take it on, this can result in less management behaviors, poor glycemic outcomes, and frustration with their devices, not knowing how to use them effectively. I know I've heard in my sessions from kids before, these young adults will come back and tell me like, well, I've had diabetes forever, and they really taught everything to my parents. And they don't feel prepared to take on what they've taken on. And feeling unprepared in adolescence can affect management in emerging adulthood and older adulthood. But importantly, the good news here is that perception of parent involvement can improve outcomes. If people perceive that they still have the support and their parents can help and their parents will help, that can be a great benefit to them. Now, on the other hand, of transferring responsibility, technology can also challenge independence, especially now with CGM and hybrid closed loop systems. They offer opportunities for sharing glucose data. And sharing glucose data was, in some cases, a really good thing, right? It's meant to mean that you have a longer leash as you go into independence and someone has an eye on you and can keep you safe. But for some adolescents and young adults, sharing glucose data can be a negative experience. Research has suggested that sharing BGs can be viewed as hampering their independence, especially if people feel like parents are helicoptering them or using their data to impose restrictions or punishments. Now, you'll have to stop me if I talk too much because this is my favorite topic. Technology and identity. So I think we've all heard the term identity, especially if anyone's taken like Psych 101 class in college. But let's just spell out what research defines as identity. So identity is a broad, dynamic, constantly changing framework that includes your self-concept, how you think about yourself, and is influenced by the people around you, the different environments you're put in, and your personal experiences. They all sort of change and mold the person that you are. Now, identity exploration is really common in adolescents and young adults. It's, you know, as they like cheesily say in the books and movies, like, they're finding themselves. This is the time. This is the age. But diabetes technologies may not always fit in with the person's identity. And if they don't fit with the person that somebody wants to be and become, they could be rejected because they are not part of the desired identity. So even in this presentation, we've heard about how technology affects identity. We don't often talk about it as like, this is the link. But because this is my area of interest, I feel like this is the link. But even throughout these slides you've seen thus far, look at all these terms we've already used in our previous slides. Greater sense of disease, social stigma, embarrassment, hassle, disliking outlooks on body, disliking device on the body. It really highlights how technology affects people's body, their emotions, and their social life. And identity is a fundamental part of life with diabetes and technology is a fundamental part of diabetes. So to bring this out of the more theoretical realm, this table on the screen describes some of the day-to-day challenges that we see of how technology can impact identity. They still fall under those physical, emotional, and social buckets. But the point here is that diabetes impacts people fully, right? It affects your body, your mind, your network, everything. And technology as a treatment option does too. So ideally, and my hope is that what this means is that the better we can do in getting people to accept their diabetes and technology as valuable to them, then the easier this becomes in going through your day-to-day life. So to put a positive spin on things, we are now going to get into how we can facilitate uptake and sustained use of devices. And we will provide you with some resources and different things to bring back to practice. Okay, so first, I talked about this earlier, but we need to do better. We need to be aware of our own biases. And so providers may unintentionally impose additional barriers to technology on patients if we don't start doing this. And so there are some training resources available for interdisciplinary healthcare providers. Harvard has an implicit bias recognition training. It's directed towards all of us, multidisciplinary. You can find it online. It's implicit.harvard.edu slash implicit slash education dot html. And it kind of goes along with what the Joint Commission has actually recommended that healthcare providers do. So they recommend we use emotional regulation, partnership building, perspective taking, and individualization when working with patients. And really just reflecting on our own thoughts and really working on reducing stereotyping. And so now I'm going to switch gears a little bit and kind of give you guys some tips about what I use to ensure my adolescents and young adults in practice have greater success staying on technology. So first, it's important to emphasize different techniques to ensure that one is wearing the device and not discontinuing. for reasons like bad insertion sites, making sure that they're using a location that's working well for insulin absorption, that's not falling off, giving adhesive tips, and then also how to access adhesive supplies like the skin tack wipes or like the extra adhesive tape. If they don't know where to get it, they're not gonna use it and it's not gonna help them. And then also really emphasizing what number to call for customer support, how to call in any failed CGM sensors or pods or infusion sites and emphasizing that it's important to call them in so that you don't run out of supplies because this is a population that is at high risk for running out of supplies and then discontinuing wearing the devices. So for training purposes, I usually make sure with this age group that we are training on the device at a time that works best for that individual. So making sure not only that the follow-up but also the training are at a flexible time for the patient. So I utilize a lot of virtual trainings when appropriate and then I also utilize that for follow-up, making sure that the training is accessible. I also utilize the pump companies when I have to to make sure that there's more training time options like on the weekends since my clinic doesn't offer that. And then I will follow up with them virtually or in person if they're able to make it just to make sure that they get that good continuation of care. And then making sure that you're asking them their preferred method of communication and then finding whatever is the best option that's HIPAA compliant or within your institution's policies is also key. I don't have the luxury of MyChart right now but I used to have MyChart at my old institution and that was such an amazing way to communicate with a lot of young adults. I can tell you I'm in this age group and I do not pick up my phone when people call me. That would not be a good way to communicate with me. So really, you know, thinking about these young adults have really crazy schedules, a lot is happening and they're still learning how to balance their life and their schedule. So figuring out how do I communicate? How do we get them in for training is really important. And then we can do a better job and we can still continue advocating for device affordability and insurance coverage. Technology education is also so important not just for patients, but for providers. I think from the patient perspective, it can be so valuable to get that comprehensive individualized education because what ends up happening is that people feel not only prepared to start the device but they feel really heard and like how this device will work for them. And I would highly recommend checking out the first reference here in my list from my friend and colleague, the late Hannah DeRosiers who wrote an excellent paper on the benefits of comprehensive structured education for youth and families. And on top of just the patient education, provider education is not only recommended, but it's wanted. Providers have said as much that they don't have the time to learn everything that the education is not easy to access. And so having some guidelines spelled out can be of great benefit. There are also multiple ways in which providers can effectively motivate and encourage sustained device use in AYAs. I often feel like we have so much power, we don't always use it to its full advantage. So research has already suggested that AYAs want to see that their provider's enthusiastic about technology. If you want it, then they want it. And then personalized discussion of device benefits. I know I've sort of like really driven this like to the extreme and talking about personalization, but it's so important for this particular age group. They feel misunderstood, they wanna be heard, they want things to go easier for them because they have so much to balance. So personalizing what's going to work for them makes a big difference. Shared decision-making is another thing that AYAs have suggested they want because shared decision-making shows your respect, it shows that collaboration, it takes the teamwork approach. And then of course, availability to respond to questions and concerns. And I realize everyone here is so busy, like I am by no means suggesting that you need to be on call for people when you start them on technology, but sometimes just knowing that a provider would be available should they have a question helps people feel more open and learn from their experiences with the technology. And I've narrowed this down to listen, validate and collaborate. That's the best way we could maybe utilize our relationships a little bit better. And not to be, continue to be repetitive after I just said this, but personalization here is so important for this group. So we need to be able to understand what they need in their lives and then talk about how technology can meet that need. So how do devices benefit them specifically? Not how do they benefit everyone? Not how do they benefit the parents? But if it's important to your patient to not have people on their back all the time, then maybe we talk about how technology helps with that. But if it's important to them to, I don't know, get lower blood sugars, then you talk about that, but you don't just apply the same one size fits all to everybody. And again, in this age group, it's particularly important to consider that parent perceptions and patient perceptions may not be the same. They may not have the same needs, but the hope is that the technology will be able to address both. They just, they're prioritizing things differently. And then we need to consider the perception of usefulness and how easy these devices are to use for each specific person, family, and lifestyle. Yeah, so going more into the personalization of device features. So there's research from PERSIS that actually found that adolescents and young adults really wanted features that reduce the physical and the emotional burden of diabetes. And then secondary is the A1C or the time and range improvement. And so it is really important that we focus on the desired features, like what the population is asking for, and not just on what we define overall as best outcomes. And so one way that the diabetes community themselves has addressed maybe not changing the size of devices, but has changed the way devices work and the features available is through the DIY and open source communities. And so the diabetes community themselves created, or has developed software that is open source, anyone can use it, where you're able to better personalize some of the alerts, alarms, ways to view data, some of the algorithm features, exercise features, et cetera in these devices. And I do have a handful of young adults who really do love their DIY or their open APS systems because it offers them what is most important to their needs. And the other thing I really quickly want to add on that goes along with the different device features and sharing data is making sure to set boundaries. If you are a young adult and you have parental support, I know when I first got my CGM, my dad was following my blood sugar and he was like texting me like, ooh, going up, going down. And that was really annoying and not helpful to my care. And so setting the boundaries like, okay, my parents will get an alert if I'm actually low or high for X amount of time, you have the ability to set those boundaries so that one is safe, but that there's no helicopter involvement. So that's important as well. And then when working with young adults, it's so important to embrace young adult learning theory. So young adults love learning from each other. They love embracing other peers and learning from their peers and looking at peer role models. So that's social learning theory, but there's a lot of online engagement happening with young adults as well in this area. So I know that there's some Facebook groups are more like, I think middle-aged now, but on TikTok, on Discord, on Instagram, there's a lot of discussions that happen surrounding diabetes technology. And there is research that backs that the diabetes online community, although the dialogue that happens amongst community members is not clinically validated or moderated necessarily by healthcare providers, there's very little harm and actually a lot of positive impacts on psychosocial outcomes and self-management outcomes from engaging, especially in the young adult age group and also different peer support type programs that are in the works. I've seen like peer mentors really help engage others with technology and troubleshoot problems. So keep your eyes out for Dr. Michelle Lichman's work coming out in the future. And so engaging the community. So really, again, looking at peer guidance and support that happens on the online communities and allowing this technology troubleshooting and emotional support that happens in real life, that's really what people gain from engaging with the online community. But there's other support networks that exist as well. There's young adult specific events that pop up that are usually advertised online. The Diabetes Link exists. So the Diabetes Link, formerly known as the College Diabetes Network, they've revamped and their mission is now to serve young adults with diabetes either on the college campus or outside. And there's different, JDRF has like young leadership groups and Children with Diabetes has some young adult engagement as well. So all those networking opportunities are great as well. And then we wanted to leave you with some resources. So the first, I put the Diabetes Link and then their Resource Hub on here. So the Resource Hub, it's new from the Diabetes Link. They have different types of media and resources on there and there are some technology ones. And a lot of what they do is designed with the input of young adults. So it's, you can use it as a provider but it's obviously also for your young adult patients. Dana Tech by ADCES, it's the awesome ADCES technology platform. If you want to learn more about a device and happen to have some free time, you can go to Dana Tech's website and you can look up the new Omnipod 5 or the new Libre 3, which isn't that new anymore, whatever. To learn more about how that device works and get some materials around that. And then I wanted to put a plug in for myself. I'm in the process of developing a financial and health insurance literacy toolkit with the Diabetes Link, that's the Helmsley study where we're engaging young adults and other community members. And although there's not a lot of resources right now to help individuals, especially young adults with insurance barriers, there are some printed resources like JDRF has some really good ones that are clinically validated, but it's just a text resource. So like young adults like learning more from each other, but they're there and they are helpful. And I also think Diatribe has some really nice ones that walk you through kind of like advocating if you have to advocate through a prior authorization or things like that. So utilize those as well while you're waiting for new resources that come out to help get better access to technology. And then I also wanted to let you guys know if you don't already know about DiabetesWise, they have the healthcare professional website and then they also have the patient facing website to help your patients figure out what technology matches their preferences and then to help you order it. And so what we want you to take away from this is that providers may be able to leverage greater use through greater collaboration with adolescents and young adults living with diabetes through personalized education on device options and features and seeking understanding of the needs of the adolescent and young adult. And we have six minutes for questions. Thank you so much, Persis and Julia for your wonderful talk and presentation. Thank you. While I'm waiting for questions to arrive, I can ask you a question. I start with you, Persis, actually. For the first time, I mean, I heard about identity in your presentation. Would you be able to share with us what work have you done in this work? Yeah. Gosh, I wanna take up your whole six minutes now. Yeah, the work that I've been working on in identity started when I was in graduate school and it was a little broader. It was just identity around diabetes in general. We did a qualitative and a mixed methods study looking at what it took for people to incorporate diabetes into their identity. And what we found is that for people to feel as though diabetes was a part of them, they needed to feel that it wasn't an issue, that they could accept it as part of who they were as a person, that they didn't feel any stigma around it, and that it didn't feel like it was interfering with their life, but rather routine in their life, which it sounds lovely and perfect and would be wonderful if everyone could experience diabetes in this way. But I think there are a lot of challenges to that. And so the work that I've been doing now at Jocelyn is a little more focused on what's the process in getting people to incorporate. Thank you. Yeah. So we have one question here. What recommendations do you have for supporting young adults who are transitioning between health insurances as far as providing guidance for selecting health plans and possibly navigating periods where they are uninsured? It's a big question, but I think, Julia, you're inside- I don't have a full answer here. I wish I did. My full answer is what I'm working on right now with my research to develop a toolkit to address all of these things. But the best thing you can do right now is just make sure that your young adult patients that will be transitioning insurance or starting a new job are aware that they're prepared for an insurance change. So when I talk about preparedness, we're talking about, I know this is kind of weird for me to say as a healthcare provider, but stocking up on supplies and insulin, making sure that they have a backlog of everything if they can is really important. And then also providing them resources with how would they access insulin if they don't have insurance? Well, so I know like, for example, there's a program through Novo Nordisk where if you don't have insurance, you can get your month's supply of vials for, it's like $99, things like that, just like kind of gathering all the resources they might need ahead of time. And really like knowing exactly when they'll run out of supplies though, encouraging them as soon as they enroll in their new plan to start getting everything going with transferring prescriptions is really important. And then making sure they understand like the key things about their new plan. So you can't go through the whole plan with them. We don't have time to do that a lot of times, but sometimes social workers or care navigators do have time to kind of go through some of those big questions. I do not recommend sending them to insurance companies themselves because a lot of times they misdirect people to a plan that's not best for their financial or healthcare situation. So Gabby, I'm sorry I couldn't answer your question fully, but basically provide resources, help them prepare and make sure that they have a backup plan if they don't have insurance. I think we have one minute for one more question. How do you make sure you're personalizing technology discussions without incorporating biases? That's a great question. It's a really good question. Yeah, I like to think of it as similar to like a problem solving discussion. So if we're talking about personalizing technology, I want to know what their issues are first. I wanna know what they need from technology. And then on just like a totally neutral level, I want to be able to give input on what I know about technology that could address those concerns and those needs. And I don't think it can be challenging of course, because these biases are inherent and sometimes we don't even realize that they're coming out, but I would hope that in thinking about this in a more neutral way, like in a problem solving way that maybe it might be a little easier to focus in on just the technology benefits of this, because that's really what we are trying to get them to see here. And I often use that approach as well. I'll focus on like what their main concerns are about diabetes. And then I will introduce the systems in ways that can support their main concerns. I wanna add a quick comment here. I mean, as a pediatric endocrinologist, I really hope I know a lot about these patients and they come to me with these questions. So what I try to do actually, I do provide data and share my experience about different systems. And if we do have a teenager who is an athlete versus some cultural differences in meal habits, and we can provide this data, what advantages and disadvantages of all this. I think your question, Marissa, is when young adults get diabetes care from campus health professionals, how do you recommend they manage the technology side of diabetes care? As many college campus health centers may not have these expertise. Do you want me to answer that one? Or do you guys have? So I can say, at least on my college campus, I work at a hospital that's affiliated with the university. So like that center can refer to me as a diabetes care and education specialist to see those patients, but also utilizing some of the great online resources so that they can stay up to date themselves so they know what to ask for is also very empowering. So providing them with like diabetes link resources, diatribe, JDRF, anything that's up to date so they can update themselves and then advocate for themselves for the most up-to-date technology. Thank you. I think we are out of time. Thank you all for attending. Thank you, Perseus, Julia and ADA for helping us coordinate this webinar. Okay. Thank you for coming. Bye everyone. Thank you everyone.

Diabetes Technology Interest Group

Dr. Laia Eklisbor

technology in children

technology in adolescents

type 1 diabetes

barriers in diabetes technology adoption

financial barriers

logistical barriers

racial disparities

ethnic disparities