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Using Digital Health to Connect Young Adults with ...
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Hello and welcome. I'm Dr. Benjamin Dress, Professor and Rosalind Carter Chair in Mental Health at the Rollins School of Public Health at Emory University and Health Systems Expert for SMI Advisor. I'm pleased that you are joining us for today's SMI Advisor webinar, Using Digital and Mobile Health to Connect Young Adults with Early Psychosis to Treatment. Next slide. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to get you the answers you need to care for your patient. Next slide. Today's webinar has been designated for one AMA PRA Category 1 Credit for Physician, one Continuing Education Credit for Psychologist, one Nursing Continuing Professional Development Contact Hour, one Continuing Education Credit for Social Workers. Credit for participating in today's webinar will be available until July 17, 2023. Next slide. Slides from the presentation today are available to download in the webinar chat. Select the link to view. Next slide. Please feel free to submit your questions throughout the presentation by typing them into the question area found in the lower portion of your control panel. We'll reserve 10 or 15 minutes at the end of the presentation for Q&A. Next slide. Now, I'd like to introduce you to the faculty for today's webinar, Dr. Benjamin Buck. Benjamin Buck, Ph.D., works in the Behavioral Research in Technology and Engineering, or BRITE Center, in the Department of Psychiatry and Behavioral Sciences at the University of Washington. His research is focused on developing innovative mHealth assessments and interventions for schizophrenia spectrum disorders and cross-diagnostic persecutory ideation, as well as engagement mHealth, or the development of mobile health interventions that increase the likelihood that underserved populations present to and receive evidence-based treatment, with a particular focus on young adults at risk for psychosis and their families. Dr. Buck, thank you so much for leading today's webinar. Thank you so much for having me. It's really a thrill to be here. I'm a big fan of the SMI Advisor Initiative and have attended many a webinar, and so it's really exciting to be delivering one. I want to report that I have no relationships or conflicts of interest related to the subject matter of this presentation. Also, to lay out my learning objectives for today's presentation, upon completion of this activity, participants will be able to list three barriers to young adults at risk for psychosis receiving evidence-based specialty care, describe three reasons digital and mobile health tools are promising in reducing barriers to care, and then last, to identify two emerging strategies for using mobile health to reduce duration of untreated psychosis. Before we get started, I'll also provide an overview of topics that I'll cover today. Those include the promise of early interventions for psychosis, the problem and challenges associated with treatment delays, why mobile health might be especially well-suited to address treatment delays, mHealth as a bridge to treatment, so connecting young adults who need to access care to the care that they need, through the lens of two particular interventions that my team has been developing over the last few years, one called NORTH, which is designed for young adults at risk for psychosis, and BOLSTER, for caregivers to young adults at risk for psychosis. Then I'll close by talking a little bit about next steps for this work and also applications of mobile health broadly in the context of care for psychosis. So to begin, I'd like to provide some context about the importance of early intervention for psychosis. We know that early intervention is absolutely critical to long-term recovery. The onset of psychosis happens in youth and early adulthood when critical transitions are taking place. Young adults are leaving for school, starting first jobs, entering lasting peer groups, romantic relationships. It's a period of important transitions. This also is a period during which the largest illness-related deterioration takes place. So timely, high-quality intervention is crucial to prevent significant functional losses. We know from a series of studies done over the last decade, work done through the RAISE project, for example, other programs on track New York, on track to other states, several other early intervention programs, that early specialized intervention has a significant impact. The model of coordinated specialty care, which involves multiple services integrated on one team, providing higher-intensity, recovery-oriented services to young people in the midst of their first episode of psychosis, so combining medication management, individual psychotherapy based on CBT and positive psychology with family psychoeducation, supported employment or education, and case management. Due in large part to those research developments that I mentioned, as well as hard work on the state and national level to prioritize specialty early intervention services, this approach is available to more young adults than ever before. And early intervention services have been around long enough in the United States and abroad for meta-analytic evidence to support this approach. So this is a paper from Correll and colleagues in JAMA Psychiatry in 2018, where it's been demonstrated that early intervention services outperform treatment as usual as it pertains to relapse risk, symptoms overall, as well as likelihood of remission over the long term. In addition to the research evidence, others have notably commented on the promise of early intervention for psychosis. In 2015, Pat McGorry, who's a pioneering psychiatrist who kind of championed this approach, this kind of approach early on, described early intervention for psychosis, I think aptly, as obvious, effective, and overdue. And this panel on the right is from an NPR interview from Tom Insel, the former director of the National Institute of Mental Health. And he recently wrote a book called Healing. And in that book, he expresses really a call to action and sort of a critique of the sort of whole mental health system and research system of which he's a part. And that makes many critiques about the way we've thought about mental health conditions and meeting the needs of folks in need. When he's asked of what he's most proud of from his time at NIMH, he cites early intervention for psychosis. He says, you know, what we began to understand, referring to his time at NIMH, is that by combining medication and psychological and cognitive therapies, bringing in families, giving agency to the young person involved, providing academic and employment support, we can actually help kids recover. And then we can get to a point where kids who had had a first episode of psychosis weren't destined to have a second episode. This is very exciting considering where we've been a generation or two ago in the treatment of psychosis. Lasting recovery and remission are achievable for many young people with significant symptoms of psychosis. So the challenge now is really to ensure that folks get access to those treatments quickly, get access to those treatments quickly. Why is this the case? Well, a duration of untreated psychosis, a long duration of untreated psychosis worsens long-term functional outcomes. This is another meta-analysis from Howes and colleagues in 2021 that demonstrated that a longer DUP is linked with poorer outcomes in positive symptoms, negative symptoms, the likelihood of remission, and overall functioning. So some of the same kinds of outcomes that benefit from early intervention. This translates to a DUP of four weeks or relative to one week being linked with more than a 20% more severe symptoms at follow-up. I do want to note that there is some controversy related to specifically the strength of these associations that pertain to how it's measured, what's been referred to as the lead time bias. However, there's a consensus, even amongst folks who have criticized sort of the domain of duration of untreated psychosis, that regardless of how much impact it has over the long haul, it absolutely has a negative impact when folks don't have access to care that they need, related to sort of those functional losses that I referred to before. And it appears to be the case that when delayed, early interventions are less effective. This is a study out of the UK from Richard Drake and colleagues. This graph on the right represents expected change from early intervention programs. It's a bit different, such that lower on the graph is better. And so you'll see that the longer DUP becomes on the x-axis below, the kind of reduced benefits become reduced the longer one waits, the expected benefit gets smaller. So it's not only important that young people get access to early intervention, but also that they receive it quickly. The World Health Organization has previously cited this number of three months as sort of this critical time period, that duration of untreated psychosis should never exceed 12 weeks or three months. But in the real world, and as someone who has worked clinically, you know this from experience, and also we know from research evidence, that most real world estimates are much longer than that, a year, two years, three years. And oftentimes this estimate is a distribution that's described as having a long tail, meaning the folks who wait the longest can often wait quite long, five years, more than that. So why does this happen? Well, there are numerous barriers to rapid treatment access. First, resources are scarce. There are two in three psychologists and psychiatrists per 10,000 people in the United States. Provider shortages are rampant. And this, of course, is felt even more intensely in specialized fields. Secondly, many people have to travel long distances to get to clinics. And this is even harder, again, when you're talking about specialized treatment facilities. Most counties in the United States are mental health shortage areas. And that doesn't describe just access to specialty teams like coordinated specialty care, but really access to specialty mental health services overall. Third, we know that the mental health system is complicated and costly. And there are, you know, some reasons for optimism. There's some positive changes, Medicaid expansion, improvements to how mental health is reimbursed, but there is still a long, long way to go. Many people still can't afford treatment or are concerned about hidden costs such that they just avoid going through that complicated system altogether. Fourth, we know from first person accounts that oftentimes young adults experience a long period of confusion and ambivalence about what's happening with regard to their symptoms and how they feel about it. So in general, just the general population, a minority of people can correctly identify the symptoms of psychosis or schizophrenia. So you layer that basic information deficit layer on top of that, just how disorienting and scary symptoms can be when they first present. And that leads to a very difficult period for folks to access care. And fifth, many young adults have negative beliefs about treatment seeking. And again, this is another thing that has improved to some extent in relation to previous generations. But many have bad expectations about care and many from experience. You know, many people see the mental health system through the emergency room, through sort of traumatic first episodes or experiences, interactions with law enforcement, experiences that lead them to want to kind of fear losing autonomy and want to avoid the mental health care system altogether. We know that barriers to specialty mental health care also are highest amongst underserved and minoritized populations. Claims data reflect that Black and Hispanic youth are less likely to receive outpatient behavioral health before a first episode of psychosis. And so that means that their pathways to care can be more difficult. That's less likely that those symptoms would sort of be caught in outpatient settings where they can receive high quality care quickly. And also speaking to costs and difficulties in access relative to non-Hispanic white individuals, minoritized young adults are also less likely to have access to private insurance, which can limit treatment options and access as well. And many of these barriers to care, lack of insurance, lack of affordable services, difficulties in access to treatment settings, scheduling, understandable reluctance to engage in the health care system are amplified by structural inequities like neighborhood segregation as well. So facing these barriers to in-person care, young adults at risk for psychosis are looking to digital solutions. And a particularly compelling example of this comes from our colleagues at Mental Health America. So this is a study written up by Mark Saville and colleagues recently wrote up data on individuals who visited the Mental Health America website to complete a psychosis screener. So just about all of these folks are interested in just learning more about their condition and trying to figure out what their level of risk is. So in that paper, they reported on a one-year period of 2017. They reported that over 120,000 self-report screening questionnaires were completed during that period. And you can view some of these data on the MHA website. You can see this number has increased as you would expect just through the development of technologies and also the pandemic. And these participants were much more likely than epidemiological estimates to identify as LGBTQ, which may also speak to folks who are looking for information but may face additional barriers and concerns about accessing mental health services as well from that population. Only about half of the folks who completed these screeners had ever had any kind of mental health diagnosis before. And while about 80% provided a score that suggested they were in need of an additional more specialized assessment and kind of likely at risk for psychosis, only 17% planned to seek treatment as a next step. About 20% said they would seek out more information online. Almost 30% said they would do nothing. The higher number said they look for support by talking to friends or family. So there appears to be this gap of young people who are noticing these kind of early signs and seeking out information but are ambivalent or reluctant about seeking services. So why mobile health? Why is this where mobile health comes in? First, there's really the question when we're talking about mobile health or the use of smartphones about why digital health? And the short answer to that question is that young adults are looking for digital tools and will reuse them regardless of whether or not we as mental health providers build those for them. So about 94% or more of college-age youth have used the internet to find health-related information. About three-quarters have already used a health-related mobile app. A similar percentage have listened to or read someone else's health experience online. And importantly, I want to point out that these estimates come from 2018 Hope Lab data, which suggests that, number one, these are five years ago. And again, technology uptake tends to increase over time. And secondly, we know that the most significant event in terms of interest in and access to digital health, the COVID-19 pandemic, has occurred during this interval. So also something that I want to highlight is that if we want to get a sense of what tomorrow's young adults will be like, we can look to sort of data focused on today's teens. So this is a survey from the Pew Research Center that was released in fall 2022, looking at teens aged 13 to 17. Ninety-seven percent of teens responded in this survey that they use the internet, quote, almost constantly or several times per day. One of those two responses, which is up from 92 percent in 2015, half say that they're online almost constantly, and that's a number that has doubled since 2015. And in those same Pew data, we've also seen significant increases in smartphone access among teens from 2015 to 2022. It's an increase in 73 percent to 95 percent in this particular survey. This tends to hold in general across demographic groups, wherein each gender or racial or ethnic group divide results in greater than 90 percent of respondents reporting access. That doesn't mean that digital divides are over. They absolutely still exist and are a problem, but are closing, thankfully. And importantly, I want to point out that the gaps between higher income and lower income households are much smaller as it pertains to smartphones than it pertains to desktop or laptop computers. So it seems that digital solutions may be particularly well-suited to address barriers to kind of a wide range of individuals. People also access their smartphones more frequently than internet-connected computers. They carry them on, you carry them on your person. There are a range of estimates of how long people spend on their smartphones each day. I'd encourage you all to check out your kind of screen time estimates once in a while to see how high this is for you. These are a couple of news stories related to a study conducted by a mobile analytics firm called App Annie, which suggested around four hours per day, the kind of eye-grabbing headlines saying things like, Americans spent a third of their waking hours on mobile devices in 2021. Around 2014, smartphones passed computers as the device that people use more in their leisure time to consume media. And importantly, mHealth has been done before with individuals experiencing psychosis and schizophrenia spectrum disorders. So this is FOCUS. FOCUS is a program developed by some of my colleagues here at the University of Washington. It's been tested in Chicago, groups at Dartmouth, St. Louis, and all around the country. FOCUS is a self-management intervention for individuals with serious mental illness. And what we mean by that is that it promotes the kind of behaviors that determine whether someone with illness will recover. So things like reducing maladaptive thinking, increasing medication understanding and motivation, improving sleep, lessons about coping with voices, has three key functions. So ongoing measurement of distress and dysfunction, in the moment, real time, real place intervention strategies, and also importantly, a weekly outreach from a member of the clinical team or human support to provide coaching and support. And importantly, this was tested as sort of an adjunctive addition to existing services. In initial feasibility work, examining focus, this is in a sample recruited from community mental health centers in Chicago almost 10 years ago now, just quite a long time in the digital health field, researchers found that participants used focus frequently, 86% of days that they had access, and most of the time they opened the app on their own, self-initiated, not just from reminders or notifications. Most reported that they would recommend that system to others. These are individuals with schizophrenia spectrum disorders. And in this feasibility work, which was an open trial, so just pre post data collection, researchers found significant improvements in depression and psychotic symptoms overall. More recently, focus has been compared to sort of brick and mortar in-person recovery oriented services. This is in comparison to wellness recovery action plan group. And the focus program with the human support demonstrated equivalent clinical effects, summarizing across lots of data here, and similar client satisfaction, and also higher engagement in focus. It appears that with mobile health, barriers to entry are lower. Folks don't have to commute in, and they can also importantly, use a smartphone system after hours when they might be in distress, but not have access to clinical care in the moment. Also Actasys, which was developed in the UK, Sandra Bucci and colleagues, this was developed specifically for early psychosis, also as an adjunctive program to be provided in the context of early intervention. Actasys similarly uses prompted assessments a couple of times a day, asking whether participants have experienced certain symptoms, and then based on their responses to those questions, they're provided sort of brief coaching based on CBT for psychosis and supplemental content, things like relaxation exercises, access to recovery stories and links. And as mentioned, this was developed specifically for early psychosis. And in a proof of concept trial of the Actasys intervention, I wanna point out that participants who completed at least a third of those data collection prompts were given some incentive, but even considering that sort of low bar for engagement, usage was quite high. So 75% using it on average of once per day, satisfaction with the intervention was quite high, 90% recommending it. And also similarly to focus, this was also in comparison to routine symptom monitoring, researchers found large effects on psychotic and depressive symptoms. So to recap some of these data to answer the question of why mobile health, we know that mobile health can be accessible broadly. It's appealing to young adults to be available in real time and real place when we're all looking at our phones and that is acceptable and has promising effectiveness. So the innovation here, the premise of my team's work is essentially this, let's use these promising technologies to solve what I'd argue is the biggest challenge facing early psychosis programs today, and that is access and getting folks in the door quickly. Let's use mHealth for help seeking. So I described this model as using mHealth as a bridge to treatment. And what I mean by that is that an mHealth intervention can provide self-guided resources immediately when the individual downloads the app or gets access to it, self-guided coaching through clinical skills or stress management skills. And then once they're using the platform, that intervention can be used to encourage help seeking through motivational content and psychoeducation. This approach has been done before in other populations. This is a systematic review from Evans Lacow and colleagues, which looked at targeted interventions. So not universal things like ad campaigns or large multi-component engagement efforts like has been done in some settings for early psychosis. These interventions are promising as in this systematic review, most showed an improvement in at least one help seeking outcome. Most interventions focused on the general population. So just encouraging help seeking overall rather than a targeted group. Importantly, in the systematic review, researchers found that active involvement, so sort of interaction with the system, interactive exercises was associated with greater likelihood in improvement in help seeking attitudes, but only about half of the interventions identified in this review had that kind of active component. And importantly, none focused specifically on psychosis. So taken together, this approach of digital interventions to encourage help seeking behavior seems promising, but it hasn't really done, hasn't been done specifically this way in psychosis before. So these appear to be uncharted waters. So that's exciting, but also scary. And what my team did in response to that to kind of ground our work is to engage participants in user-centered design. This is Don Norman's Design of Everyday Things, a sort of canonical book in the field of user-centered design. And this approach basically describes a philosophy that's based on the needs and interests of a user to make a product as understandable, clear, and intuitive as possible. So that's what we'll be talking about for kind of the rest of this webinar is how we've done that. Now, we took this approach to develop two interventions. So one is called NORTH for Young Adults at Risk for Psychosis, and the other is BOLSTER, which is designed for caregivers to young adults with early psychosis. And now these aren't necessarily designed to be deployed together. They don't interact with one another or any kind of shared system. They're just two related projects that sort of benefited from each being kind of conducted within the same team. Our user-centered design and development process for each had some of the same steps. Kind of broadly speaking, there were a few differences, but generally involved understanding the needs of the end users, conducting some usability testing to see if these solutions were functional and intuitive to participants who wanted to have access to them. And then soon, the kind of culminating phase will be a pilot feasibility trial to examine whether this approach is overall feasible and to see if there's any kind of signal for preliminary effectiveness in bridging people to care and also addressing kind of symptom-related distress in the moment. So first we'll start with NORTH, which is designed for young adults at risk for psychosis. Our work started by focusing on broad features and content areas in survey research with young adults experiencing symptoms of psychosis who were seeking information online, including through Mental Health America, like I mentioned before. And so we went in and sort of kind of sounding like out-of-touch researchers, sort of trying to get a sense of what's cool here? What will the young people be interested in using? And I think, speaking to that, there is an assumption, and there was an assumption on the part of our team at the time, that because of how young adults use digital technologies now, they spend a lot of time on YouTube, also platforms like Instagram and TikTok, that they would want kind of similar features, but geared toward mental health. And I think there's an argument to be made for those kinds of interventions for folks who are kind of already connected to them to be sticky and connect with peers. But our survey research showed quite different results. When we listed for individuals features for them to rate, it was the features that kind of sounded most like social media that were the least popular. And what we see across these kind of least popular responses, this is on a one-to-five scale of interest, one thing that kind of unifies them all is particularly concerns about disclosure. So we were thinking about, we could use technologies to connect folks with peers and sort of that they could post their experience or review others' posts, or also to kind of facilitate communication with family members. This sort of bringing other people into the loop was something that some of the folks in our early surveys were reluctant about in kind of concerns of what might happen resulting from disclosure, sort of loss of autonomy by kind of sharing this information with a provider or another person in your life. For example, the most popular features pertain to things related to information. They wanted digital mental health providers to do what mental health providers do best, provide them information, how to cope with stress, how to manage their mood, information about medications and side effects, and also something that stands out, an interest in tracking changes in symptoms over time, and also in goals over time. So let's be talking about a few kind of brief takeaway points across multiple phases in this development. So we've, based on that kind of first initial data collection and needs assessment, we invited a stratified sample of young adults, again, reporting symptoms of psychosis back for interviews, describing what they would want in an intervention. We asked them lots of questions, both to understand specifically their barriers to care, what kind of held them back, what gave them kind of a sense of reluctance. But I think one that demonstrates our approach most clearly here and leads most obviously and directly to North was this question that we asked, that imagine you've got a magic wand. You can wave it at your smartphone and create anything you like to receive support for your mental health. You can't wave the magic wand and make your symptoms go away, but you can create anything on your phone with that magic wand. So we had two raters read each transcript and discuss themes until consensus was reached and landed on these following five themes. So first and most prominent was this idea of a coping skills toolbox. Essentially a toolbox to cope, reminders what to do when you're feeling stressed or symptomatic. Second, again, a way to track symptoms and stress over time. Organizational tools. Many of our respondents were in school or working and also having difficulties potentially remembering things, keeping everything together, their schedules, making a plan and wanted some help and particular resources to help them kind of maintain organizational skills to maintain in each of those roles. Importantly, even though many of these folks, so again, like I said, we stratified the sample by individuals who were engaged in specialty mental health and others who were unengaged. Another common theme that came out was folks wanting a human support, but importantly kind of disclosing that they wanted to have access to the tool and autonomy and how they use it, but the ability to sort of share what came from their use with the digital tool with a provider or with a human support if they chose to. So some autonomy and maintaining control over the direction of their treatment and their recovery by saying, I'm interacting with a system on my own, I have control over my own information and if I wanna loop someone in to help me with it, then let's make it easy for me to have that conversation. And one less common, but kind of interesting theme was this idea of a sort of automated listener. Even a couple of participants conceptualized this almost as like a recording or journal, but an idea of a way to sort of dump one's worries or stresses into the platform to kind of a receptive listener, even if that listener doesn't necessarily respond back, but just like, I'm dealing with so much stress right now, I'm feeling overwhelmed, I wanna just get it out of my head. So a few quotes to demonstrate what was the most popular theme, this coping skills toolbox, really emphasize this idea of having coping skills ready as easily as possible and when you need them. So one respondent or participant saying, I'm not gonna seek out coping skills on my own, but if it's generally offered to me, if it's easy for me to access, I'll be like, yeah, I'll take it. Another participant saying, this person was also dealing with comorbid chronic pain, reported, I'd like it for the app to just say, just do that one thing where you tap your nose, pull your ear, you don't feel like you're gonna have pain. Now, we responded to these initial data by creating a mock-up of a few of these features. So an early kind of rough sketch prototype. So this was created in prototyping software called Figma, which allows participants to interact with smartphone systems, but just on a computer. So you sort of have a cursor as if it's your finger, but it wasn't actually on a smartphone device. And we populated it with a couple of features to sort of test out and see if we hit the mark for what our participants wanted. And this was prototyped in 15 unengaged young adults. First, we created on-demand coping strategies. So really responding to that coping skills toolbox. So a combination of video and audio, written text across quick, simple screens. Also tracking with some kind of useful information about what, let's see if I can get the demo here to play. There we go. With information about which categories in the app and the kind of coping skills toolbox were chosen the most, those which led to the greatest change in their momentary distress scores. This is something that the young adults described wanting to kind of gain insight and understand changes in their mental health more and having control over those data themselves, keeping them private, but also learning from them. And then also in addition to these features, some of the information that they were seeking about help-seeking were written specifically for the experience of someone who had sort of just recognized their own symptoms and hadn't yet received care. So what we conceptualized early on as a treatment-seeking guide. So describing what are the things that are likely to get in the way? What are things that you can do to troubleshoot? And also just kind of validating and normalizing some of the difficulties of that process. So we asked 15 unengaged young adults reporting psychotic symptoms to interact with this prototype. These were remote data collection meetings where they interacted with the prototype and completed a task. So doing something like completing a practice, completing a lesson, reviewing their sort of tracking data or sample tracking data, and asked them to rate on a one to 10 scale the usefulness. And we got some overall positive feedback primarily on the treatment-seeking guide and the sort of informational resources provided, psychoeducation and kind of anti-stigma information. Some of the positive feedback that we got from participants was that this was useful information, that they liked that it was simple and they liked the sort of nonjudgmental voice. Some negative feedback or things that we needed to improve upon. It needs color, we knew that, it's prototype. But it was important to remember this needs to be sort of visually appealing and potentially, I don't know about fun is the right word, but at least some levity. Lots of words, folks found that to be a barrier sometimes when there was a wall of text. And others saying, I really like it, it's just not built in yet. I wanna be able to find specifically kind of personalized content to me that's specifically relevant to my experience. So based on that initial usability testing, we decided let's keep it simple. Let's remove unnecessary text. Let's reduce the burden of kind of on walls of text by providing video and written options. Let's allow for tracking and link the tracking with self-guided practices so folks can kind of learn from what they do in the app. And then last, emphasize autonomy. That this is a private tool just for you that you can use, but you can also kind of share the information that you have with a provider when you seek services. It's available to you when you want it. So the finished product is NORTH, which is a digital tool for young adults with early psychosis seeking care. Just we're kind of finalizing and bug testing here in response to those kind of early phases. It's based on principles from a few different evidence-based approaches. So cognitive behavior therapy, motivational enhancement, and positive psychology. So a couple of features of NORTH. So practices are similar to the coping skills toolbox. These are repeatable practices. So things that someone could do every day to improve their momentary stress or wellness. So for example, you could think of a gratitude practice. It's not something that you do once and learn and are done with the idea. It's something you could do every single day. So for example, this is that gratitude practice. Users see a simple introduction or time estimates and how long it might take. Then they have a sort of structured mini journaling interaction that guides them through the use of the skill. Their personal content populates these prompts so they can see it ahead and read what they read and kind of reflect on it. And importantly, this is super important to highlight, no written text is saved in the app or in our database. The only way that users can export what they write into free response, those free response fields, is if they export it by sort of texting it to themselves or saving it on their device. So they have total kind of autonomy and control over how they interact with these kind of active journaling exercises. And we can't even see it as the research team. New lessons are also featured. So teaching how psychosis works, something for example, the stress and vulnerability model, how stress puts you at risk for psychosis. Just kind of briefly, you can see how this looks. This is a practice, example practice about compassion. As video content, which I won't play, but you can see just one kind of idea per screen, users can just swipe through a more digestible, kind of easy to take in content of one sort of key idea. Additionally, they're provided help-seeking information, links to resources and treatment listings, so they can contact providers when they are feeling ready to start treatment, and also the ability to track changes over time, as I mentioned. So in the subsequent phase, we asked 15 young adults who were engaged in specialty mental health programs to complete a few tests with it and provide feedback. So that means completing a sort of meaningful engagement, doing a practice, watching a lesson. All participants were successfully able to complete all tasks. And after kind of one introduction to the idea of a task, only on four occasions across all participants, about 4% roughly, did participants ask for help from the coordinator or have some kind of question or ask for feedback. So it seemed that this was intuitive. And we asked them to rate again on a one to 10 scale, how useful, how straightforward and how enjoyable, and these usability ratings across all these tasks were quite high, even for this kind of enjoyable rating, which isn't necessarily what we're expecting, given this is kind of primarily oriented toward just providing you support the stressful and difficult topics. 100% of folks asked the item, would you recommend this to a friend, said, yes, I would. And all but two reported that they would be interested in using it. So again, these are folks who are engaged in treatment. And those two each said at least a part of their response there was that they were doing reasonably, feeling like they were doing well in their recovery. It didn't feel like they needed kind of additional support. And the kind of most common response of how often folks would want to use it is multiple times per week. So based on these data, we feel that North is sort of ready for future randomized trials, which are planned to start this year. And so turning our attention to caregivers and the bolster early intervention. As someone who's worked before on a first episode team, I know that caregivers and families are absolutely essential in the treatment of psychosis in young people. We know that 70% of young adults with early psychosis live with a caregiver. We know that an involved caregiver is linked with increased engagement and improved outcomes, but unfortunately also that caregivers experience high levels of stress, burnout, and even in some cases, symptoms of post-traumatic stress from kind of the difficulties of early kind of those first signs and first episode. A 2018 meta-analysis by Onwuemere and colleagues reported that there's no kind of published research on mobile apps designed for this population specifically. So this appears to be a gap, even though caregivers are great candidates for the use of mobile health for kind of similar reasons that I mentioned before about young adults. So we initiated the same user-centered design process as we did with young adults, preliminary surveys. These are caregivers to people experiencing schizophrenia spectrum disorders, not just young adults. We found the theme of informational support, so information about treatments, information about symptoms, and also the theme of communication. So this is not surprising given the focus of family psychoeducation and also some of the kind of, in general, common challenges reported in the literature that this comes up repeatedly. How do I talk to my loved one when they're in the midst of kind of intense distressing symptoms? How do I get through to them? How do I know how to respond when I'm hearing something that scares me or confuses me? Now, we conducted the same kinds of qualitative interviews with caregivers, and I'll focus again on this sort of magic wand question. A few themes emerged with the same sort of methodology here. Caregivers reported that they wanted tools for supporting communication. So sort of coaching through, how do I talk to my loved one when they're experiencing symptoms? And how do I also talk to them about seeking treatment? Self-guided support for caregiver wellbeing. It's another one that came up, the sort of kind of idea of putting on your mask when the airplane loses cabin pressure before someone in your party. How do I take care of myself to make sure that we can hold things together? Psychosis-related information, also a guide to recognizing symptoms. Some caregivers felt like, wish I had recognized signs sooner. A theme that came up repeatedly was wanting actionable information. So there's all kinds of context-less information on the internet, endless, but very little of it that provides you a sort of helpful, specific next step of do this next. And also treatment and crisis-related information and support, as we expected. So kind of speaking to this actionable feedback and also tools for support and communication, one caregiver told us, tell me exactly what to say. Just give me direct guidance. Or another saying, I would want the app to say, okay, here are some techniques to respond to your loved one. In this study, we also presented users with a prototype. This started with a sort of messaging style interface where the content of the app would be presented and they could have options to say yes, no to various questions to personalize that content, focus on psychoeducation and communication coaching, also support tools for coping. And again, importantly, that privacy feature where the written content could be exported to a co-parent or a family member or saved for themselves for later and not saved in kind of a database online. Caregivers were generally positive here as well. And again, especially with the coaching features which pertain specifically to that communication coaching. These were again, one to 10 ratings and more so with the coaching and lessons features overall. They liked simplicity. They echoed some of the young adults here in a few points. I liked the personalization that they could write in their specific content and felt that this really filled a niche that this hasn't existed before, that there isn't a tool that will kind of coach you through these challenges. And negatively, there were some difficulty with navigation, some confusion around this chat format, which we came away with thinking we really wanna get away from that. This introduces all kinds of questions when people are thinking, oh, wait, I'm talking with the app is talking to me. Who am I talking to? Why is there a timestamp? It just, we realized that was kind of an unclear structure. So we moved away from that. And also folks said they really wanted us to highlight key information. So we decided to simplify the navigation, use written text, not this sort of chat bot or messaging system, emphasize communication coaching, make sure the information is actionable, and then continue and build on this sort of warm balanced, but also realistic tone. The finished product here is called Bolster, as I mentioned, which is a digital tool to support caregivers treatment facilitation. And it combines kind of principles of family psychoeducation and communication coaching through sort of actionable guides and resources. So it provides lessons and practices focused on communication and psychoeducation. We borrowed the sort of carousel navigation for North to again, reduce the burden on written text, keeping it clean, clear, and very straightforward to navigate. Action oriented guides that were kind of answering specifically the areas that our caregivers identified as these have been some of my biggest challenges. Here's an example of one action plan. At least how to interact with one action plan. It has sort of this clear bulleted list of what to do responding to those caregiver questions specifically, but then expands like different ways you can phrase things, some important principles to keep in mind. And then last also the ability to log their perspective on symptoms over time, which is very important to some caregivers, others were less interested in, but that is also featured to log symptoms. So usability field trial is actually just wrapping up. We have kind of quick takeaway point is that it's been positive and the randomized trial is planned later this year. So some quick kind of closing points of next steps in clinical applications. You may be thinking, I know it's mostly kind of providers here in the webinar thinking, what does this have to do with me? What about tools that are currently available? I'd say the user-centered development process of our program suggests that these tools are acceptable to young adults with early psychosis and their caregivers. And importantly, I really want to highlight that research is needed to determine the feasibility and efficacy of this kind of remote approach. But importantly, those trials are coming. So perhaps I'll come back and talk about them once they're complete. And a couple of points for kind of more application today, then I'll just point out and then wrap up for questions. A couple of things that mobile health can do first from a systems perspective, it has the potential to provide support at critical moments of treatment engagement. So you think about kind of low rates of engagement, especially among folks who face additional barriers to access care after something like an inpatient hospitalization. This might be a tool that could be provided to folks when they interact with the care system right away so that they can have some kind of support tool given the fact that they might face barriers to get in at a later time. Can also mitigate negative impacts associated with provider gaps or first session wait lists. We know in the wake of the pandemic, the wait lists are longer than they've ever been and psychiatric needs are very high. And last, thinking about the MHA recruitment, we talked with our colleagues and friends there about is there a way possibly to kind of deliver these kinds of tools since they're self-guided, they can really be provided in scalable context. So this is something that we can really try to reduce burden on the system to some extent. And from an individual provider perspective, how does this come in for you? mHealth in general can extend the reach of clinical services to after hours. I wanna point out that most logins to mHealth or SMI in general, so focus, what I mentioned earlier, most of those take place outside of usual clinic hours. Second, mHealth is really nicely positioned to support kind of intervention homework consistent with CBT type exercises, self-guided exercises and symptom tracking. And last, it sort of allows the clinician to focus on engagement and can deliver lots of psychoeducational information. So we've been thinking about ways that the clinical role of supporting a technology, a digital technology can evolve thinking about a couple of principles with the acronym TAPS. So just kind of briefly mentioned to troubleshoot the technology, to activate motivation to use it, to personalize what the intervention teaches and then summarize the content in the session. And today, if you're looking for one kind of takeaway point, if you're interested in using digital health, a lot of what I've described here is about development and kind of provisional data. I would encourage folks to check out two different resources that provide very detailed information about the evidence base for different digital tools as well as their privacy features. So Mind Apps, which is developed by Dr. John Torres and his colleagues at the Digital Psychiatry Center at Harvard and Beth Israel, Deaconess Medical Center and also onemindcyberguide.org. Encourage folks to check out each of these if you're focused on digital health tools that can be available today. So there are a lot of things that technologies can make easier for us. I think a clear application given our biggest challenges in the mental health care system is to help bridge people at risk to services, to provide them services scalably and immediately and encourage help-seeking when we can. So I wanna thank my team of collaborators and recognize National Institute of Mental Health and the Brain and Behavior Research Foundation that supported this work as well. And references are contained in the handout. Thank you again so much for having me. Thanks so much, Dr. Buck. That was really wonderful presentation. So we have a bunch of questions, but before we shift into Q&A, I wanna take a moment and let you know that SMI Advisor is accessible from your mobile device. Use the SMI Advisor app to access it. Use the SMI Advisor app to access resources, education and upcoming events, complete mental health rating scales and even submit questions directly to our team of SMI experts. Download the app now at smiadvisor.org forward slash app. So Dr. Buck, first question. So you had that very helpful slide that outlined some of the clearing houses for choosing existing apps. Are you aware of any in particular that you might project that people with psychosis consider using that are available if they wanted to try an app today? Unfortunately, there are very few and I would direct you. I see a question and answer in the field here from Dr. Torres, I guess, given our webinar format, he can't speak up, but Dr. Torres and his colleagues have done recent kind of systematic work to identify how many smartphone apps are currently available in the Google Play Store and App Store and there are very few and sort of, I don't feel comfortable now necessarily recommending one of them, but I would encourage folks to check out Mind apps and also One Mind Cyber Guide. This space changes really quickly. So you see things kind of get populated all the time. And I think lots of clinical concerns that folks have, you know, may not necessarily align specifically that a clinical concern has to be specifically a psychosis app. It might be looking for support with sleep or depression or things in the context of psychosis. And I think One Mind and Mind apps are also great resources for answering that. So yeah, there is still, there's a deficit here in terms of focusing specifically on psychosis that we're hoping to address that need with our work here. But yeah, I wouldn't say I'd give a kind of a recommendation to one that's currently available, but I encourage folks to check out those resources because that's, they're essentially peer reviewed. You've got digital health and mental health experts checking for vetting for privacy, evidence-based, all the things that you'd want from that kind of system. Sure. When you do make your app available, do you anticipate that going through kind of just being available to the general public or being filtered, you know, through either providers? You had mentioned perhaps going through advocacy organizations. How do you anticipate disseminating the app? I'm not sure. I think that there's a whole, like we're really focused now and you can see the sort of detailed information that we got from a couple of different important people in the process of the young adult experiencing symptoms and their caregiver. We really want to hear detailed information about their experience, but I think there's a whole other side of this of thinking about how might this kind of interact with current kind of clinical settings? How might providers want to see this interact with their practice? And that's kind of, there is evolving work in that area. So I think there's a lot of questions to be answered there. I think, again, what I will say is this, we importantly wanted to design a scalable tool such that it could be provided with minimal required staffing for a couple of reasons. One, because folks at risk have some reluctance about talking in detail to a clinician, like that's part of the benefit of this being a self-guided tool is that there's that big barrier is the concern about help-seeking is itself, you know, prevents folks getting access to the tool. So we want it to be scalable and that creates all kinds of new implementation possibilities of how it can be deployed. It's too early now, given the fact that we want to establish evidence before we think about deployment broadly for us to have a clear answer for it, but we're thinking about all those possibilities as we develop it. I think it's important to think about implementation as you're doing kind of the first stage work. Doesn't mean I know exactly what that implementation pathway is gonna be, but it's important to think about it as you go. So yeah, we want it to be scalable such that that can be an option, but it's kind of too early to say exactly where we'll go. And it sounds like part of what you're thinking about both based on what you're saying and kind of channeling a few of the questions is kind of where clinicians will fit with that, like how they can help their patients engage with the apps, how they can kind of use them as part of their clinical practice. Do you have, are there any kind of thoughts that you're having at this point about where clinicians- Sure. Fit into that picture? Yeah. Let's talk about that. So yeah, it's kind of was running a little short on time toward the end. So I kind of had to rush through some of that other work, but we've done some work here actually in Washington State working on implementing the focus, mobile health intervention for community mental health centers. And I and other members of our team have worked specifically on developing the role of what we call a mobile health support specialist. And so, you could think about this as it could be occupied as many different members of the clinical team, or you could think of someone who works as a case manager or even potentially a peer, lots of different professions, psychologists, really anybody on the team to be able to gain this kind of additional expertise to serve as a mobile health support specialist. And so what I have, I mentioned the TAPS acronym there. We've come up with a couple of principles of how you have this sort of self-guided tool and how does the clinician facilitate engagement with it? And we've come up with, first you wanna troubleshoot the technology. Once you check that box, you wanna make sure folks are motivated to use it. So technology troubleshooting, activate motivation. Then you really need to personalize the skills. That's where the clinical care gets really fascinating. Because I think you can look at a self-guided tool and the principle is there and it's important, just like anybody kind of applying a treatment manual. You read it and think, oh, like I really would apply this in a different way for this particular client. Helping folks kind of personalize the skills to their specific situation and then also kind of wrapping up and summarizing the content. So that is to say we've been working on developing that role. We have one paper published on that. Some other groups have been developing a digital navigator type role and encourage folks to look into that as well. The other thing I would say is I presented on North and Bolster to clinicians in coordinated specialty care here in Washington State. And these are designed to encourage help-seeking to folks who are not engaged in services, but the clinicians we talk to say, I love this. I want to give this to my clients. And so I think it's nicely organized such that it can be self-guided, but it's using principles of evidence-based treatment so that clinicians can become familiar with what's happening in the intervention and you can use the intervention to sort of deliver some of the intervention homework or kind of exercises that folks are doing to use home practice. So I think there are a lot of possibilities here. I'm focused more on the unguided, direct-to-user, self-guided side. But yeah, once someone gets in and they show this tool to their clinician, I think it'd be really great to partner with a CSC team or even kind of statewide group focused on increasing engagement so that we can say, how do we prepare the clinics so that they can use this tool once young adults get into services? Yeah, well, thanks so much. I wish we had more time. There's a whole bunch of questions as well as, well, there's a lot of excitement clearly among the attendees and enthusiasm around this work. So if we can go to the next slide, I would just say that, especially given that there were some questions that people may have had or any other topics that were covered in the webinar that you'd like to discuss with colleagues in the mental health field, you can post a question or comment on SMI Advisor's webinar roundtable topics discussion board. This is an easy way to network and share ideas with other clinicians who participate in this webinar. If you have questions about this webinar or any other topic related to evidence-based care for SMI, you can get an answer within one business day from one of SMI Advisor's national experts on SMI. This service is available to all mental health clinicians, peer support specialists, administrators, and anyone else in the mental health field who works with individuals who have SMI. It's a completely free and confidential service. Next slide. SMI Advisor offers more evidence-based guidance on navigating early psychosis, such as personal perspectives on early psychosis, parts one and two. This podcast offers insights for individual families and mental health professionals. Access the podcast by clicking on the link in the chat or by downloading this slide. Next slide. To claim credit for participating in today's webinar, you need to meet the requisite attendance threshold for your profession, verification of attendance may take up to five minutes. After the webinar ends, please select continue at the pop-up, then select evaluation to the left of event detail to complete the evaluation and to claim your credit. Next slide. Please join us on June 1st as Dr. Awaisaftab presents Navigating Controversies Around Antidepressants, Efficacy, Safety, and Mechanisms. Again, this free webinar will be June 1st from 3 to 4 p.m. Eastern time, Thursday. Thank you again for joining us. Until next time, take care. Thank you.
Video Summary
In this video, Dr. Benjamin Buck discusses the development of two digital interventions, NORTH and BOLSTER, designed to support young adults at risk for psychosis and their caregivers. The interventions were developed using a user-centered design process, which involved understanding the needs of the end users and conducting usability testing. For the NORTH intervention, young adults expressed a desire for a coping skills toolbox, symptom tracking, and help-seeking information. For the BOLSTER intervention, caregivers expressed a need for tools to support communication, self-guided support for their own wellbeing, and actionable information. The interventions include features such as coping strategies, psychoeducation, communication coaching, and tools for symptom tracking. Usability testing of the interventions showed positive feedback and high ratings for usefulness and enjoyment. The interventions are now being prepared for future randomized trials to determine their feasibility and efficacy. The interventions have the potential to extend the reach of clinical services, provide support at critical moments of treatment engagement, and support intervention homework. Clinicians can play a role in troubleshooting the technology, activating motivation, personalizing the skills, and summarizing the content for their patients. The interventions are scalable and can be provided with minimal required staffing, making them accessible to a wide range of individuals. However, there are currently few available apps specifically for psychosis, and further research is needed to determine their effectiveness and implementation.
Asset Subtitle
Using Digital Health to Connect Young Adults with Early Psychosis to Treatment
Keywords
digital interventions
NORTH
BOLSTER
young adults
caregivers
user-centered design
coping skills
symptom tracking
communication support
usability testing
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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