Psychiatry & Psychotherapy Podcast - Early Psychosis: Detection and Treatment

Episode Date: April 17, 2024

In this episode, we are joined by a panel of experts to discuss treatment of psychosis. Experiences of psychosis are common. When these experiences lead to interference in achieving life goals and/or distress, individuals can benefit from seeking evidenced-based care. The earlier individuals experiencing psychosis come to treatment, the better the outcomes. We are all allies in connecting these young people to care and services. Recovery is possible—people living with psychosis experiences can lead full, meaningful, and fulfilling lives.  By listening to this episode, you can earn 1.25 Psychiatry CME Credits. Link to blog. Link to YouTube video.

All right, welcome back to the podcast. I am joined today with a team of researchers, clinicians. They run the heads up Pennsylvania. It's like an early psychosis educational program. They also do, they work through Penn at the early psychosis center. And they are coming on today to educate my audience about early psychosis treatment, psychotherapy, medication. today we have the whole team Monica Kaakin she is a PhD heads-up co-director who oversees outreach education training at heads-up we also have Christian Kohler he is a psychiatrist co-director of heads-up he has participated in research on emotion processing brain-related studies novel treatments resulting in over a hundred publications to date We also have Dan Wolfe, MD, PhD.

He's another psychiatrist who oversees the telehealth program and is a practicing psychiatrist. He's a brain imager specialist in psychosis. And we also have Lisa Nelson and she is a psychologist who does recovery-oriented cognitive therapy and is supervising and seeing patients in the. this group. Last of all, we have Joni Burns, nurse practitioner, psychiatric nurse practitioner, who works for me, who is joining as well. So welcome, guys. Thank you for coming. Thank you. Yeah, thank you. So I thought I would start out and talk a little bit, just kind of ask, like, what is a program for early psychosis? And how do you, like, what is the passion, what is the

sort of the vision behind this program and what maybe some of the, just a little of the research coming out of it on what you guys have been able to do? So I think in other areas of the world, so in Australia and Europe, for many years, there was an emphasis on trying to engage young people who are experiencing psychosis as early as possible in care with the recognition that the longer those symptoms go untreated, the harder it is for people to recover. So we call that the duration of untreated psychosis. So there was a tremendous amount of developments in programs which provided not just medication management or therapy,

but really started to provide a number of other services on an outpatient basis that could be used in combination to really make a difference in people's outcomes. And so that was very, so in 2015, so they were developed internationally. And then in 2015, our Congress allocated set-aside funds for serious mental illness, and that led to the development of the coordinated specialty care programs in the United States. This really came on the tails of a very influential trial called the Rays trial, which showed that coordinated specialty care was better than treatment at usual in improving outcomes, reducing symptoms, and improving overall function for the individuals who participate. in that. So since 2019, so started out being relatively small in 2019, as of 2019,

they're coordinated specialty care programs in all 50 states. And in Pennsylvania, we currently have 17 programs for first episode psychosis. And you also have some programs that are that are dedicated to people with clinical high risk symptoms, which is where an individual hasn't developed a first episode of psychosis, but there are some concerning symptoms that suggest that they could. So this model is also being applied now for people in earlier stages of illness. So what we've found in Pennsylvania is that by six months, people do have in our programs, people do have an improvement in their functioning and a decrease in symptoms similar to what was shown in the raised trial.

Awesome. That's fantastic. Yeah. This is so exciting to get you all on here and to talk about this. And one of the thoughts I had was, you know, know, what is the usual amount of time that it takes someone who gets psychosis to actually get into care? And then how much has your program been able to decrease that amount of time? Well, the ideal, according to the World Health Organ, the WHO standards, is three months of duration of untreated psychosis. No one, I don't think, has approached that. In Pennsylvania, were at 12 months. So typically people are experiencing psychosis symptoms for as long as a year before they get into our programs.

We are continuing to find ways to decrease that gap. Okay. Wow, that's great. And so what is the average, like, if you guys, if there is no program, like what you have, like what happens in the real world? I think it's around like three, one to three years somewhere on there, right? It was over three years. Over three years, yeah.

That was the state, that was kind of the situation in the United States as of, I think, 2010 or so when the race trial was active. Yeah, this seems to me that, like, we know, like, or maybe you guys could talk about, like, why is it so important to get treatment early with psychotic illness? Maybe we could start there. Well, there's huge impacts for the person's school. social life of the symptoms that they're developing. So someone who's developing psychosis symptoms, maybe withdrawing from peers, you know, becoming socially isolated, and also, you know, decreasing their school or work performance to the point where some people are not able to function in those environments. So the earlier we can keep all of those things on track, you know, by getting someone

supports and, you know, and wrapped around all of those different areas that are challenging for the individual, the better their outcome will be. Maybe I could call on Dan. I think there's, I think there's two things. One is a slam dunk, I think, which is that, you know, these people are young people at critical inflection points in their kind of psychosocial development. And if you can help them be less derailed at that stage, you know, it's just obvious that you're going to have an impact, at least on a subset in terms of the long-term outcomes.

You know, there's also, and this is an area of somewhat controversial research, the idea that psychosis is itself kind of toxic to the brain and that the longer it goes on, the worst the long-term outcomes will be. So, you know, while I think that remains somewhat unsettled, you know, even if it's just the psychosocial that just is a critical piece. And so to get people into treatment both psychosocially and probably biologically early is very important. I think back historically, like, you know, there was this thought that people with schizophrenia often have dementia, right? So I think there's a long history of cognitive decline.

Dr. Wolf, I know you have done work in brain imaging and stuff. What's your sense? Do you think that there is cognitive decline in this population if they don't get treatment? Yeah, Christian Monica may have other views, but I think there's more than one thing going on here. In other words, low cognition is a pre-morbid risk, probably reflecting early neurodevelopment. We know that cognition further deteriorates as people develop early signs of psychosis and psychosis. And then I think some people may continue to experience deterioration, but the kind of early picture of schizophrenia as a dementia is probably not correct,

meaning in most people there's not a progressive cognitive decline. But recent research shows that there is an increased risk of actual dementia, as people get older, which probably relates to various things like poor health care, you know, rather than necessarily schizophrenia itself, but I don't think that's been fully worked out. Okay. Yeah. Okay.

So what are, like, what are the things that you would want providers to look for in terms of early psychosis? Like, what are the symptoms you're looking for? What are the questions you're asking? Like, if you could. could get every primary care doctor to ask these types of questions, what would you have them say? Yeah, so we actually have developed a screening tool. It's on our heads up website that we recommend. It's only a five-item brief screener. There's several challenges we hear from primary

care providers and others when they think about why, you know, should they screen for early psychosis, why don't people screen for early psychosis? One of the barriers is that it can be hard to tell whether or not a symptom someone's experiencing, say they're talking about hearing things, you know, they can't quite make out what it is, you know, but they, where they kind of wonder if people might be trying to hurt them or harm them, but they don't know if that's true. Sometimes people wonder, is this just a normal experience? Is this just an adaptive response to the circumstances that the person is in? And so we've actually age normed our screening tool that's available on our website. There's also, sometimes people think about, you know,

if someone's talking about these straight out and unusual experiences, that there may be a question of whether this is sort of due to depression, the person may be experiencing or trauma or substances. And all of those things we do know can be comorbid with early psychosis symptoms, but we also know early psychosis symptoms can go along with those experiences as well. And so we tend to advocate for, you know, don't try to sort it out. You know, someone's talking about hearing things or seeing things, things or they're acting puzzled or confused or they're talking about unusual things or they're

talking in a way that's difficult to make sense of withdrawing from peers those types of things that it's important to do a screener and to see screening for early psychosis is not nearly as common as screening for depression or anxiety in primary care or in other settings and we would like it to be I think you know we you know we have an algorithm that people can ask follow-up questions to endorsed responses, you know, to try to get a sense of a little bit more about the context of the symptoms and then a flow chart to referral to specialty care. Okay. Can we, I think it might be worth, can I just pull up that screener and then we actually look at the questions and maybe talk about it a little bit, just so it, it's called the Prime

Screen Revised 5. Is that correct? Yes, yes, yes. And people are rating this as definitely agree, somewhat agree, slightly agree, not sure, slightly disagree, somewhat disagree, definitely disagree. So question number one is, I think that I have felt that there are odd or unusual things going on that I can't explain. So that would be question number one. So they're like odd or unusual things going on that I can't explain. Number two is I have had the experience of doing something differently because of my superstitions. Number three would be, I think that I may get confused at times whether something I experience or perceive may be real or may be just part of my imagination or dreams.

So kind of like people start to have issues with reality testing, right? and then four is i think i might feel like my mind is playing tricks on me and five is i think that i may hear my own thoughts being said out loud okay so anything you want to say about these questions yeah um so we we actually developed this from a 12 item screener and we found that these uh five items uh predicted so the prime screen was developed at yale and the prime clinic there And we found these five symptom questions actually predicted the total score very well. And that's why we kind of wanted to give people the briefest tool possible so they can very easily incorporate it into a very quick screen.

And then on the second page of that, we do talk about how to score. So if someone gives at least one six, sort of just off the top, off the very easy rule of thumb, if someone says definitely agree to at least one of those items, we would say that's concerning or three or more five. So somewhat agree to those. And then we also have a way to total the score so you can see how different a person is, say, an 11-year-old gives a total score of 20, how different, you know, are they two, how different is that from other 11-year-olds in terms of two standard deviations away from the mean of other 11-year-olds. So it provides kind of a very quick, rapid tool to be able to gauge whether or not these are atypical responses. Got it, got it.

Okay. So you're trying to find two standard deviations or more above the mean? for their age group. Exactly. That's kind of a warning sign. Exactly. And so for like age 15, that would be like 15. So it would be, you know, if they have three somewhat agrees.

Exactly. Okay. Got it. Yeah, that's really cool. Because then, okay, so two standard variations you're getting into that top, you know, couple percentiles of people who are potentially having some different types of experiences. Yeah, and so like, does that predict, how well does that predict future psychotic event or a current psychotic event? Well, we don't exactly have the answer to that specific question.

But what we do know is when you do a secondary screen and then we do a more thorough, we have a specialized instruments called the psychosis, the structured interview for psychosis risk symptoms. There's a similar, that's a tool that's widely used around the world to follow up questions. So you sort of think about a two-stage screening. So the prime screen will come first, you do a SIPS. When we do that more structured interview, about 35% of people will develop a psychotic episode within a five-year period on average. There's quite a range, but that's sort of on average. So that means that there's actually a greater risk of people not developing a psychotic episode.

But the thing that's important to note is having these symptoms alone also are associated with poor. sort of lower functioning, depression, anxiety, and so on. So these symptoms are not necessarily benign in and of themselves. Okay. Yeah, and I just want to emphasize the goal of the prime screener is not to say, oh, you're going to develop psychosis. It's to give, say, primary care or other people out there who want to know, like, hey, is this normal or is this something we should worry about, a kind of quantitative tool that's age norm to say, hey, this person maybe should get to someone who can do a more thorough evaluation. That's good.

Okay, so in your program, you're trying to get these to family medicine doc, pediatricians, and then if they score high enough, then you're trying to get referrals to your program. Is that correct? Yes, yes. And I would broaden out to community mental health providers, teachers, we have an educator's version. So anyone who comes in contact with the young people, you know, in a professional capacity, can use this screening tool. And there may be some, you know, we put some decision points in our algorithm to say, you know, what do you do? Should you watch and monitor? Maybe reassess, just or

reassure, or, yes, consider a referral to specialty care. Okay. And so, and then once they get referred to specialty care, who do they see in your team? How does that work? Yeah. So Head Sub has a central triage mechanism where people from anywhere across the state can contact us and we'll try to connect them to the program that's closest to them, or people can contact sites directly. So on our website, we have a find-a-center page, and the centers are listed across Pennsylvania, and then the contact information is there. So either one. I do want to mention, since these programs are all over the country, we also have locators for these kinds of programs across the country as well. So there's several different locators. So if people are not in Pennsylvania, there are programs like this across the

country. Okay. And then what does it look like to like once, so now the kid is referred to you guys, and then what happens next in your program? Christian, do you want to talk to speak to that? Yeah. So I just wanted to add that so when people screen in through the screener and they are referred, then the programs themselves will perform another kind of screening for suitability for their programs. And the situation in Pennsylvania is that, We have 17 first episode sites, so people have surpassed a threshold of psychosis on the screener or the kind of whatever than the screener for the first episode site is. But then if people remain within that area of at-risk symptoms for development of psychosis

or clinical high risk, there are only two programs in Pennsylvania. So the access to specialized care is a lot more limited. There's a program in Pittsburgh, and then we have a program as well. So we serve both the clinical high-risk population and the first episode population here at Penn, providing very similar services. When someone calls, again, we gather the relevant information, And then the next step is if the person is eligible.

And most people, after going through the screen, then are deemed to be eligible for an evaluation. They come in typically with their parents or caregivers. We really put a high emphasis on family involvement. We're talking about young people between the ages here at Penn between 16 and, let's say, 25 or maybe a couple years older than that. So as they experience these symptoms, most of them are more dependent on family support and family advocacy for treatment. And at that point, the person themselves would meet with the psychiatrist and the family, the parents, one or both parents, would meet with a psychologist to do the collateral information about the person's development, upbringing. How did the symptoms develop? what did the family kind of see in terms of how the situation progressed to this point.

And then we come together and we discuss, is the person kind of willing to engage in the first episode care program? And we discuss all the services that I involve. Okay. Yeah, that's good. So then it's like the conversation is moving towards like this is kind of like the treatment package. Is that right? Yes.

So this is where the coordinated special league here comes in, which is provided by the small team of people who all work with each other on individualized care for the young person. So this is where Lisa can talk about psychotherapy, then there's medication management, there's supported employment and education, there are peer support services, so people with lift experience who give back,

very important to promote kind of understanding of illness and then their family support services. And so there's a whole package of six, seven services. And again, the first episode sites receive some support through SAMHSA for those services that we cannot bill for. Okay. Yeah. And Dr. Nelson, tell me about the family involvement, and the recovery coordinated specialty care treatment model. Okay. Yeah, so we offer recovery-oriented cognitive therapy, which is really rooted in cognitive therapy developed by Dr. Aaron Beck, and he also was a part in the development of recovery-oriented

cognitive therapy. And really, there's two parts to it. It's really got the spirit of recovery. meaning, you know, the goal is to help the person get to what they want to get to in their life. Whether, you know, that is their relationships or the purpose that they want. That's the aim. But what we're really looking at in terms of the, you know, what's going to help the person is what's going on with their belief system. You know, are there beliefs that are underlying some of the symptoms that we're seeing?

and are there also beliefs that can really activate the person to really pursue those things that are meaningful in their life? So this is the treatment model that we're using and across the different sites in Pennsylvania. And so what I have been doing at the Perk Clinic, and they're going to start doing this at other clinics in Pennsylvania, is how can we adapt this model to help the families? because the families, as Dr. Kohler was saying, are very involved in a majority of participants are still living with their families. And that is a lot of contact time that they could really be getting help and supported and, you know, especially help in activating some of those beliefs that are going to get them back in their lives. And so that's, you know, what I've been really doing is working with the families on understanding, you know, strategies

and what they can do to really help their loved ones. Okay, just give me some, like, common strategies that you give families to help their loved ones. Just in case any families are listening and they can, like, they can kind of just take it from here, you know? So a lot of the time, the families come in, you know, so confused, so, like, you know, shocked in what's going on. So a big component of the group is the support piece. families getting together, realizing that they're not alone in this experience that they have other people. That is one of the parts of the groups, and I really, I want to emphasize that because I think families having support is essential. These experiences can be so isolating for both the individual and the family.

And some of the early things that I talked to family about is looking for the wins. That's one of the strategies that sometimes we can all get trapped in these, like looking at what's going wrong for the person. and their symptoms and how, you know, it's keeping them. But if you can find those things that are going well for the person, really looking at the strengths, that's the first thing I have the families do. That's what we want to build on. That's what we want to grow. So it's kind of shifting that focus.

And I start out each group asking family, give me some wins for the week. And I really see it over time in the groups because we have 12 sessions, start to change the family's mentality and really infuse, like, more positivity towards like there are some things going well. And that is in themselves. They're doing the cognitive therapy where they're looking for the good. And they're kind of changing their belief system to be more positive and more activating. Because you really want to get the families out of feeling trapped, scared, hopeless to feeling some sense of hope. And then other things we do is, you know, a lot of the families, when this happened, it just throws everybody off track.

And so they stop doing things. Their loved one stops doing things. The family stops doing things together that they used to. do. So initially, too, we do a lot of what are the things you used to do as a family. Can you start doing those to some extent again? And that entails like the family starts sharing, well, we haven't gone on a even car ride together. And I'm like, get in the car and go. Go see some trees, you know, do some things. Remind the person of who they are. And the family starts to remember, this is who we are. And everybody's kind of finding themselves again and activating those

beliefs that are really going to move the person forward again to push through some of these experiences. So that's some of the initial stuff that I think families can think about. I could also provide more examples for like how you, strategies we give families for like talking to someone with, you know, some of that content that can be more delusional in nature if that's helpful. Yeah. Yeah, go ahead. Yeah. So sometimes, you know, I think this is one of of the biggest thing. So the things that families really struggle with are negative symptoms, hallucinations, those perceptual experiences, and the delusional thought content when someone, you know, is talking a lot about something like, you know, they're really fearful of people being after

them or possibly being watched, those types of things. So in recovery-oriented cognitive therapy, we're really looking at, you know, what is going on for this person? What is the underlying belief system. And we talk about how, you know, it sounds like the person's scared. They're feeling vulnerable, right? If they're expressing those types of beliefs about people maybe watching them or being after them. And that's something the family can work with, right? The specific contents really hard, but if you can understand that meaning underlying it, that that person's saying they're afraid, that they're fearful, maybe you can do some things that help that person feel safe, help that person feel adequate, you know, and a lot of that entails that person doing the thing

again that made them feel like they were capable. And the families and I, and all together in the group, we look for that thing for the person so that they can start doing it more and the family can support them or do it with them. So that's kind of an example. Yeah, getting them to do the things that made them feel capable before the psychotic stuff started, right? Mm-hmm. And then moving the families

from a place of trapped, scared, hopeless, into a place of like, there's some things we can do, there's some progress we can make, we can move forward. So it gets that family system kind of moving in the right direction.

We should mention having to deal with that a lot of families feel killed about. Yeah. You know, they are adolescent or young adult experiencing psychosis, and parents then look back and blame themselves for a, like, what could they have done to have contributed to that, or what did they miss so that the person didn't come to treatment earlier. And this is where the interaction with other parents is really important so that they, that they learn that this is an exceptional kind of event that happens that can't be.

predicted because the psychosis is you know you could call it a random occurrence it's not all that frequent within society but it makes such a great impact on family units so that families know that they are not to blame that they then can again focus on positivity and a way forward yeah what is this schizophrenia occurs one percent in all cultures all populations across the world. Dr. Nelson, anything that you say to help families reduce their guilt? I think, you know, knowing they're not alone, but I really, the most convincing for families is really when they hear from other families. I see such a light go on for them when they hear someone talking and they know that experience to some extent. You know, never two experiences are the same,

but the similarities are there and knowing that this parent is so involved in trying to, and it's not like something that they necessarily, like they did wrong, you know, that they are a good parent. They were doing what they could do. When I work with the parents, they're always constantly asking me for things to do. They want to help. They want to be involved. And so it really is important for families to have some ideas or some strategies so they can,

be kind of a part of that process because the research research shows that family involvement really helps people stay engaged in treatment. It's really important for that. In terms of like the rate of relapse, that's reduced if families involved. So having this network because the hardest part of, you know, recovery is if, you know, you feel alone in it. But if you have a network, you feel supported, you know, you have that family network. and then hopefully your clinic can also provide you with that support system. I think that is one special thing about coordinated specialty care is it does create this, like, network for people in terms of like the family system, but also hopefully peer and, you know, having someone to support you around education and those types of things. So I think the biggest thing I say for families is to reach out and get support.

Yeah. Okay. Let's talk a little bit, Dr. Koholer. Tell me a little bit about the psychopharmacology considerations in early psychosis. What are the things that you, what are the perspectives that you have, what works the best from what you've seen over the years? So we view medication treatment as an important part of coordinated especially care, but also one that we have to pay a lot of attention to with respect to, kind of which medications are indicated and how does the person agree to take medications, how sensitive are they to medication side effects? In early psychosis, it is common for people

to experience other than psychosis, a lot of anxiety, depression, trouble with sleep at night. So it's not uncommon for people to present already being on, let's say, antidepressant medications anti-anxiety medications in terms of coming to an agreement about taking an antipsychotic because in some respects the health literacy is fairly high in young people when we recommend medications to them then the next thing they will do is they will look them up and read about them and it's important that they understand what these medications do. So we want to be, we want to focus really on target symptoms that young people would agree to that they bother them, that they need to be treated, such as hearing voices, having frightening

thoughts, feeling unsafe. So it's important to focus on target symptoms rather than labeling the condition as anything more than psychosis symptoms. And we really use family members as advocates for medication treatment. Then with medication treatment, it's important for young people to be started on, really on a low dose of an antipsychotic medication and advanced that gradually being very mindful that on the positive side, people who have never been exposed to an antipsychotic before for the treatment of psychosis, they are more sensitive and they respond better to medications. but on the negative side is that they're also more sensitive to side effects. And if we treat people with standard doses of medications too quickly,

then the side effects will be more prominent, and people will then stop medication. And that in itself then can start the process of people being more opposed to taking medication or just flat out refusing treatment. So I think up front it's just very important to be sensitive about negotiating with the person and their family, which medication to use and then to move forward. So I had Dr. John Kane on the podcast. I think you guys reached out maybe after listening to that episode,

and we talked about long-acting injectables, we talked about clozapine. And I'm curious what role Clozapine or long-acting injectables have in your sort of approach? So to start with long-acting injectables, I think as was mentioned in the John Kane podcast, in the past, long-acting injectables were viewed as treatment

for people with chronic serious mental illness, where the symptoms could be stabilized, but where recovery was no longer possible. That included the time period until second generation antipsychotics came on the market, which was a little more than 15 years ago. And then with the advent of second generation antipsychotics, which are a lot more tolerable, the field has commonly moved towards using long-acting injectables much earlier in the illness. We have to consider that about between 25 and, let's say, 40, 15% of people experience difficulties

with treatment adherence, with medication adherence. And the long-acting injectables can really help a person who would be willing to take medications, but for different reasons, be that poor memory, having trouble with organization, or, feeling three out of seven days that they need medication and four of seven days that they don't need medication, then become non-adherence to antipsychotic treatment and therefore don't benefit. So I think that we try to capture that group of people who are willing to be treated but have trouble adhering to medication much earlier with the long-acting ejectable medications. and in general they are just underutilized in the United States

and a lot of work needs to be done to make them available to more people, but in a way that is based on a mutual agreement and not a coercive way. Then the issue with Closieril is that Closierl also is widely underprescribed in the United States, much more than in the, really the remaining, of the world, surprisingly. And it has to do a lot with the providers not feeling comfortable to prescribe the medication, feeling that clausoryl poses a burden on the prescriber because of the frequent blood checks, but also because of the risks that are associated that are relatively small,

but that are associated with clausoryl such as neutropenia and some other side effects. So clausoryl really should be used after a person fails to standard trials of antipsychotic medications, and we are very far away from the point where the field would widely accept that for different reasons. We're not there yet. No. What do you think it would take to get there? I mean, like, what efforts can we make other than having a podcast like this and encouraging people to use Clozapine if they failed to trials of antipsychotics, right?

Yes, I think it's really us prescribers who are the target group to change the representation of prescription rates of clozereil within. within the psychosis population. I know my personal issue. I have two patients that would benefit, I think, right now, from Klozpene. One of them doesn't want to see me at all. Doesn't believe he has schizophrenia,

has no insight into his disease, will attack his parents even. The only hope for him is to almost like hospitalize him once a month and get an injection. I don't know if you have any, other insight into this what to do with this particular patient and then maybe I'll tell you the second one I'm going to change a couple details of course and leave things vague on purpose but yeah the second one there's no insight into disease he gets injection once a month but it's not

enough he's still his thought process is not kind of glued back together he's still stuck not able to move forward in his life so I'd be curious from from maybe Dr. Nelson's perspective on what she would do psychotherapy-wise, but also Dr. Wolf and Dr. Kohler, like what you guys would recommend as well. Yeah, I'll hand it to others, but let me just put in a pitch for coordinated specialty care. I mean, we're trying to get that to people in the first two years, but it's just better care. I don't actually work in coordinated specialty care.

I mean, I collaborate with these folks, but I work as an outpatient psychopharmacologist, And the team approach, the wraparound services and coordinated specialty care should be standard of care for everyone with schizophrenia and not just for the first two years. So some of these medication difficulties are almost impossible to grapple with when you're seeing someone 30 minutes, you know, once a month. It's very hard to build that alliance and you don't have those other supports to address what's more important than them. If they don't think medication is the answer, that takes a long. time to increase that insight and build that trust and having a team of people who are not just showing up saying hey take this medicine or else is really critical to the medication piece you know so some people do very well in a standard outpatient practice but there's a lot

of people that just kind aren't sufficiently effectively reached by it so I'll hand it over to the folks who are more on the ground in that well dr. Pooley you mentioned in which is a huge variable in the population that we are treating. And again, getting back to what I said before, that early on we are working on the person having insight that there are symptoms that need to be treated. And later on, trying to pull this together about explaining the person, kind of what does this mean clinically?

Some people can come off medications, some people need to have long-term treatment. Now, insight is interesting because insight can be gained early on, in my opinion, in the, let's say, the illness of schizophrenia. It is much harder to gain insight later. So people who have low insight or poor insight will stick with that schema, and obviously they remain under-treated, and that just reinforces poor insight and that they won't respond to treatment.

It's a very vexing situation, and I think that in the United States, you're talking about this kind of this gray area of a person's to have to respect the person's willingness to come to treatment and the autonomy to refuse treatment versus kind of what can we propose or even some more kind of supportive, supportive or let's say coercive methods such as mandated outpatient treatment to keep people in treatment but when we talk about long-acting injectables in clausorville i think the low-hanging food is really the population of people are between those who just respond very well to treatment

and those on the other end who just will respond poorly to treatment there's a lot of work to be done in that middle section to change the overall outcome of schizophrenia's spectrum disorders or the psychotic illness. Okay, so so far I have coordinated specialty care, team approach, and that sometimes, if they can gain insight early, that usually stays with them. If they don't gain insight early, they've been psychotic ill for years,

it's going to be harder to gain insight. Okay, so what exactly, Dr. Nelson, any sort of pearls and wisdom on what to do when someone has, low insight, let's say you're coming in with your coordinated specialty care, like, what are you doing to help them in that journey? Well, one of the things that I think about with insight is the person's also reasons. Like, there might be reasons that you don't want to identify with a certain diagnosis, you know, like schizophrenia has a huge stigma. And there can be some things about, you know, the person also might not want to talk about their symptoms because the symptoms, you know,

at some point relate to some sort of traumas associated with their early episode, you know, thinking and talking about these things is aversive for people. So that's something that, you know, I keep in mind in terms of, you know, are there any inns that the person can talk about these types of things? But I guess I would also say that something that I tell families is that, you know, recovery is an active process. It's not a passive process. Waiting at home for the medication to kick in doesn't always work for people. Sometimes you really have to go out there and start doing things again to get that organization and that structure back in your mind. And sometimes we really do hear families or, you know, loved ones saying like, well, I'll do something

when the medications start to work. And those people can end up sitting around for a long time because there is a psychological component to this. That, you know, in Dr. Beck's early research, looking at this with Dr. Paul Grant, is that people have these, you know, they can have the negative symptoms, but they can also have negative beliefs associated with those.

And those have been found to be these defeatist beliefs that people form after an episode that, like, you know, they're only going to fail if they try or that people don't actually really like being around them. And these are really what can get a person stuck and they can stick around unless the person starts doing things again. And, you know, if you have those belief systems, like what's the point? You're not going to put forth the effort. And then you can't really see your capability, right? It's really hard to get a gauge of how well the person is thinking and doing. And so, you know, when you're thinking about a person and they seem really stuck, I would really look at what are they doing in their day? What is their schedule like? When they wake up on Monday, you know, what time is it? What do they do? How do they get their day started, the structure that they have? And that is a lot of work that I do with families as I'm like, give me their calendar. Tell me what they're doing. That kind of thing.

Love it. There's some really good, really good stuff there. Of course, this is such a vaccine. difficult situation to kind of look at like the potential reasons they don't want the diagnosis of schizophrenia, maybe reason, like what it means to take medications, maybe past traumas related to taking medications, being forced to take medications, and kind of breaking down, like what kind of beliefs surround what's keeping them from moving forward, what is the point that defeatist beliefs? I think that's all really helpful. Yeah.

Any sort of other thoughts jumping in to anyone else's mind as Dr. Nelson talks about this? I hear from a broad standpoint, like, really enjoyed looking into your work on the nuanced approach, like going beyond the first episode and looking at that as a treatment point and walking it back to where you identify clinical. high risk in attenuated psychosis. I'm wondering if it would be possible just to provide maybe more of a definition of what you're describing or thinking of clinical high risk. So providers out there in the trenches, you know, they see a patient in front of them. They do the screening form and say, yes, this is what this is. Yeah. So generally in the United States, we're looking at what we call subthreshold or attenuated versions of threshold symptoms. So threshold symptoms being hallucinations where the person has a full on sensory perception with 100% sense of reality where they're hearing

things that aren't there as hearing a voice as clearly as you hear me now. In the subthreshold or attenuated version of that, a person may not have 100% conviction. They may hear things. They may mishear things. So there's a fan going and they hear whispers coming out of the fan. There is a stimulus, the fan, but they're mishearing them. So that's an attenuated version of the more threshold form of hallucination. Similarly, for delusions, which are delusions are false beliefs that a person holds with 100% conviction. So if I believe that the FBI is out to get me, they're trying to hurt me or harm me in some way, and I believe that with 100% conviction, at least at some point in time, that's a threshold delusion. A subthreshold version of that

might be, I kind of wonder, I see people out there. Could that be the FBI? No, maybe not. I'm not sure. And so there's a less conviction in that belief. It's not held with the same level of severity or intensity as what a person experiencing a threshold symptom would be. So in that screening tool, all of those are actually pitched more towards the subthreshold level, which means anyone's saying definitely agree to any one of those might have to be worth from subthreshold on up to threshold. And one of the things we do in that and other pages on that is to actually.

provides some follow-up questions that can be asked to get at sort of the threshold versus sub-threshold level of intensity for their symptoms. Yeah, any follow-up questions on that, Dr. Burns? No, that I think that was really helpful for someone who may not be reading the write-up, which right now is, it looks fantastic and its draft form. And just hearing and listening to the episode just gives, I think highlights how the work of this group really breaks this. down into recognizing that we're not waiting for the first episode. We're really trying to see these distinguishing factors before we get to that flare. Exactly. And then Dr. Wolf,

I don't know if you wanted to say something about that as far as pro-network and NAMSkitsaprenia. I think time is short so we can make a promise for the future. And most of these are research studies that don't have results yet. So, you know, we can come back another time. But I think broadly, there are two massive efforts. One is getting what we know works better and well to as many people as possible. And there are huge barriers to that and doing the research to prove it works better so that insurance, you know, needs to pay for it. That's one goal. But then the best care we have right now is not good enough. So the other massive effort we have, you know, and that relates to the LAIs and your patients on closet pain, you know, even our best treatments don't work well.

for a lot of people. So, you know, there's, it's exciting times on the research front in terms of bringing together many academic centers into networks to get the necessary expertise and sample size to start to combine clinical assessments with biological assessments, genetics, brain imaging, structure and function, hormones, inflammatory biomarkers, facial and speech patterns, you know, digital phenotyping, I know you talked about with John Keynes group smartphone data, and to use that to be able to better understand and predict what's going to happen to people and be able to use that to be able to test new treatments to hopefully eventually prevent, but also treat and change trajectories. So, you know, we're part, our group is also part of

ongoing NIH-funded research efforts to develop biomole. markers to kind of figure out who will respond best to what treatment and predict better who's, you know, going to have which outcomes, which is really critical for progress and also the Epanet. So these will give you information to put on your website, EPenet project to develop kind of learning health systems so that as these coordinated specialty care programs and things are trying things out, the results are being aggregated and used in kind of closer to real time. to learn how to improve care at a systems level. So the combination of bringing biology into this and bringing kind of modern technology into systems level care, you know, this is a promise

for the future. But it's an exciting one, I think. Okay, one other thing we haven't really talked about is the impact of substances on the development of psychosis. I've done a prior episode showing the link that we're seeing with THC and psychosis, the higher potency THC content has led to increase risk of psychosis. Any thoughts on this? Any work that you guys are doing on this as you, in your program? Like, is this part of the package of what people get like abstinence from marijuana or talking about the risk factor of marijuana or? Yeah, maybe I can kind of talk about the more general approach of the first episode sites and then Monica can talk about more specific interventions.

But yes, it's a huge problem in the first episode population that between 30 and 15% of people use marijuana cannabis before the onset of the onset of people. of the first episode of psychosis, and you already mentioned that there are different models about how cannabis affects psychosis and brings out psychosis, but fact is, it's very problematic when a person continues to use cannabis products because it is associated with worse treatment response,

not just pharmacologically, but also the person being able to engage in treatment and the programs really try to work with young people using kind of, first of all, education. Marijuana cannabis is widely disseminated within the population and, you know, with medical marijuana cards that everyone can get for treatment of anxiety and the like, and the acceptance in especially that age group between 15 and 30. People don't understand that in a person who has experienced psychosis, the use of marijuana is problematic and that they are part of an unfortunately select group of people

who just should not be using marijuana. And that kind of bringing that information across is very, is, it's challenging because there's, there's peer pressure and then people view that they treat themselves. They treat their anxiety, their sleep problems, but at the expense of worsening psychosis, symptoms, or not being able to stick with the treatment program. So I think the first episode programs do a fairly good job up front with respect to education, also that would involve the family unit. And what we see is the use of marijuana to drop within the first six months or so by about half. But then the issue is kind of what, how do we then address the continued use of marijuana?

And so just in terms of a general approach, the first episode cites, we are not, we are not substance use treatment programs. So at some point we have to make the decision. Should we refer a person to an intensive outpatient program for substance use? And fortunately, there's more kind of acceptance that this is, that marijuana use can be a problem that needs to be treated. I remember 10, 15 years ago when we tried to refer someone for what we called cannabis dependence, the programs just wouldn't take them because at that time, the agreement was, well, that's just not a problem that substance use treatment programs treat. So then, Monica, maybe you can talk a little about the motivational interviewing that project,

that's part of our epinette. Yeah, yeah. So we're part of the connection learning health care system, early psychosis intervention network that Dr. Welk was talking about. So that's a collaboration between Pennsylvania and Maryland and a learning, joined in one hub of EpiNet and so uniting our programs across both states. And what Melanie Bennett there at the University of Maryland has developed, is working to develop as an adaptation of the teen marijuana checkup, which is a motivational interview. viewing strategy that was developed for a broader audience, but really looking to tailor that to the experiences of people experiencing a first episode of psychosis. And so a lot of it centers around traditional motivational interviewing approaches. You're kind of assessing where the person is. You're starting to understand their motivations and the reasons they use cannabis, meet them where they are, walking into change, you know, sort of starting to identify, I raised change talk.

So thinking about, you know, what the person themselves might want to see change or different in their life, if they're not using cannabis, and then moving into sort of action. But it really focuses on meeting the person where they are and kind of going from there in terms of reducing or eliminating cannabis use. So there's a pilot study. She's adapted it. Now she's testing it. So we'll see how that works. Awesome. Yeah.

And I'll just add a, again, pointing the future wrinkle. I mean, I think things are going to get worse on this front because, you know, decriminalization, likely a good thing. But switching from decriminalization to, you know, let's fund our educational system on tax dollars derived from getting as many people to use marijuana as possible. You know, anyway, we're going to see increases in psychosis related to cannabis. and it's, I think, a difficult thing to treat. Wait, wait. Say that again? We're going to fund this? I'm just saying I think there's a reasonable middle ground.

I'm not a policy person, so these are just my opinions. But there's a middle ground between, you know, throwing people in prison for smoking marijuana and setting up big businesses with ads to sell marijuana to as many people at a high-a-potent. as possible. So, you know, we see the people who suffer from the, you know, increasing use of cannabis and there's going to be increasing prevalence of psychosis. And I don't see that turning around in the near term. So to the extent that there's any silver lining, it's that, you know, from a biological

perspective, it's very interesting that cannabis seems to play a causal role in precipitating psychosis. and there's a lot of interesting biology in the brain. You know, cannabis works by doing things in your brain, and there's plasticity mechanisms. It's affecting during adolescent development that likely produce this risk. So there's going to be a lot of research into how cannabis increases psychosis and, you know, potentially a silver lining, which I wish we didn't have the cloud,

is to, you know, understand those mechanisms. and use those to actually do a better job of, you know, reversing those processes, not just for people who are using cannabis, but for everyone who's developing psychosis, they're probably broadly relevant neurobiological mechanisms at play that cannabis is impacting. And adding to the public health concern, just anecdotally, you know, every audience, I give a lot of presentations, lots of talks, I talk to parents, educators, students themselves, you know, young people, they are shocked to find out there's any association between cannabis use and mental health, let alone psychosis. So I think that's not coming out in the public messaging,

and there's some cultures and subcultures where cannabis use is just so normalized that, you know, there's no messaging about the adverse mental health effects. So I agree with Dr. Wolf, big problem. Yeah, I wish they took the dollars that they spend, walking up people who smoke cannabis and turned all those dollars into treatment like your program and addiction centers. That would be my dream. Is it going to happen? Probably not. That's what I call the reasonable middle ground. It would be nice. Yeah, they should tax, they should tax cannabis to fund psychosis treatment centers, you know, stuff like that. Exactly. Okay. So I want to make sure like we've covered most of the basis. One of the things that's kind of like, it's still like I haven't

really figured out is so there's some like lighter psychotic symptoms that you're screening for that are positive. Like, okay, the FBI isn't out chasing me, but was there FBI? Like, was there someone outside? You know, it's a little bit more subtle. Are what do you guys, are you following those people? Are you just starting treatment? Are you starting antipsychotics? Like what is the standard care for the more subtle psychotic symptoms. So the standard care in our program is a, we, after discussion, we have had this multi-tier approach where in people who, and, you know, it's of course flexible, but in people who have very soft psychosis symptoms, we offer education about that this is a clinical high-risk

state, but always with the information, as Monica stated, that most, people who identified as clinical high risk will actually not experience psychosis over a period of, let's say, two to five years. But people will have other symptoms. They will have anxiety, mood problems, and they will benefit from engaging in treatment, be that psychotherapy, medication management. We tend not to use antipsychotics for people at clinical high risk. risk unless the symptoms are so severe that it pretty much predicts the conversion. And I mean, that is very difficult.

Conversion can happen very gradually over time. Conversion can happen suddenly. But I think as a field, we have come to realize that antipsychotic medications play very limited or no role in the population of people with clinical high risks. but antidepressants certainly can. But so we offered similar treatments, but perhaps at a reduced frequency and really what the person is agreeable with.

And then we try to follow people over time, make sure I think one advantage is that they have been engaged with a location of treatment. And even if they don't come there for several months, they know that if things get worse, that this is a place where they can return to for further evaluation and care and to try to then grab people earlier if they convert to having actual psychosis. My understanding is that even in the settings that have universal health care, such as United Kingdom, that most people,

people in first episode programs are not identified as clinical high risk before. So I think theoretically a lot of work would need to be done there, but I think it's also illustrated that in Pennsylvania, there are two clinical high risk programs and there are 17 first episode programs. So in some respects, it's a lot easier to, clinically speaking, to kind of focus on the person who has experienced psychosis and is past the threshold. rather than the population of people who have high risk symptoms.

Okay, thank you for that, yeah. Okay, I'm gonna kind of like, make sure we hit anything you guys definitely wanna hit before we wrap up our time. So let's start with you, Dr. Culkins, any final pearls that you would give providers who are treating first break psychosis who are out there and maybe imagine,

Imagine a nurse practitioner in rural America and they're in the trenches, any pearls that you would give. And maybe I'll ask all of you guys this same question. Well, one thing we haven't really spent much time talking about today, but I think is really important, is that, you know, schizophrenia and psychotic disorders are highly stigmatized. They're the most stigmatized disorders. And most of what people learn about psychosis disorders comes from the media. So one thing I would say is I think everyone should educate themselves about what those stereotypes are about. SMI Advisor has some really great myth-busting things.

It's because part of what we see is that a lot of the stigma is internalized not by just individuals and their families, but also by care providers who may think about schizophrenia and psychotic disorders as chronic debilitating disorders that a person can never recover from, for example. And so the message that I would have is that we know that's not true, that people who have psychotic disorders can recover, go back to work, go back to school, have meaningful social relationships. That varies, according to the individuals. For some people, you know, there's many different courses that people can have. But I think those unfortunate portrayals mostly in the media,

you know, have really entrenched stereotypes and many people, you know, across our society. And it's super important to make sure that we're aware of those and don't. use those to guide our thinking about working with any given individual. Great. Thank you. Thank you, Monica. That's good. Dr. Wolf, any, any pearls? I guess I'll make just two final points. One is for individuals and families, you know, getting into treatment and staying with treatment. It's not perfect and it can be hard to access, but that's the most important thing. I think. And then on the research side, you know, research is slower than we would like,

but there are even better treatments that are being developed and will be developed. And so, you know, we live in an era where there's some skepticism about science. But the science is really critical to figure out what works and find things that work better. and so encourage people to be supportive, participate in those research efforts, but also just be supportive of efforts to have public support and funding for research that's going to bring better, better treatments down the pike in the future. Excellent. I wanted to follow up on what Monica talked about in that to decrease stigma and increase

and increase health literacy, that really the increased involvement of people with lived experience is just very important, both on the level of the treatment programs, to kind of serve as a connector between the clinician team and the person receiving care, but also having more visibility within the population at large, to make people understand that people who have had schizophrenia, spectrum disorder, a psychotic illness, can fully recover and can be functional in society,

so that then would decrease the stigma and the negative stereotypes. So, Dr. Kohler, do you recommend that I have patients that I've treated that are now stable, talk to my patients that are unstable? Is that ethically okay for me to do? And then do you think it's ethical for me to have a patient of mine who's stable on my podcast to talk about their journey? I mean, I was thinking about putting in a plug for that having a podcast where you invite people with lived experience to talk about their journey

and the work that needs to be done both on a, on the ground with respect to treatment, but also within communities and society at large, I think that will be hugely helpful. Maybe not your patients, though, just some of the patients. No, no, I'm open to your considerations here. I've thought about this. I get emails from patients who want to come on my podcast,

who are not my patients. Some of them seem very unstable. And some of them have not come out publicly, and I don't think they fully realize if there's still a stigma against mental health, like, will that hurt them to come out publicly? So I think I'm always sensitive to that factor. Interesting, I had one patient come on

with factitious disorder who came on, and we changed her voice. And we offer CME for this, and I cannot track her down anymore. I think she went completely off the map, not wanting to be connected any longer to any emails or anything, right? Go on with her life and she had recovered from a really bad case of factitious disorder. So yeah, I sometimes wonder how to do this in not a way that is salacious, like some of the, you know, like you see some TV shows where they bring on someone who's obviously still very ill or, you know, it just is an awful thing.

So I have a recommendation on that. There's a group of certified peer specialists. You know, those are people who have lived experience who've gone on to become certified peer specialists. And they work in programs. They are part of the coordinating specialty care teams. So Elisa supervises our peers. But they're, you know, stable, have had training and sort of how to disclose and not disclose an appropriate ways to talk about their experiences and so on. So that may be something to consider. Okay. Dr. Nelson, any final sort of thoughts? I guess one thing that I think is important to say is that, you know, for a lot of people, the onset can happen very quickly and their recovery can take a long time. And one of the things that I hear from people that I work with, but also families, is like, when are they going to feel better? You know, and even that term to me can be really vague, feel better.

what does that look like? What would they be doing? What would they be saying? How would they be acting? But I think it's important for people to know that it can take time. And just because it doesn't happen in the way that you want it to or we're hoping it would doesn't mean it can. You know, and I think it's important for people to know that who are having these experiences, families to know that, and providers. Because sometimes people can say, well, this is who they are now. And, you know, it can take years for the person to really get back to the things that they are doing before, but it is really possible. And that kind of connects to that stigma piece that a lot of people are so fearful that this is their new normal. When there are things that that person can continue to have that progress over years and get back to doing things that are really meaningful to them or having some relationships that are really important. So I just want to kind of emphasize that hope piece is really important. because then people stick with treatment. Excellent.

Dr. Burns, any final thoughts, reflections, things that were helpful? Well, no, I really appreciate you all coming on to speak about this. Your work is incredible. And I encourage other providers once I hear this episode to take a look at the website, take a look at the resources. Because the pearls that we're talking about are embedded in there. You can share this information with family members to provide them additional support. Just really incredible resources.

And you all have really put a lot of hard work into this and are helping so many people. Yeah. And I would echo that this is, I was thinking about how much of a pleasure this is to be able to come on and to interact with a team that is doing what I would consider. the best type of pro-social activity you could possibly do in a community. I think our culture should be graded on how we take care of the people who are at their lowest point in their life, who are having the most struggles. And viscerally for me, when I hear this, I imagine, you know, if one patient has helped in this way, just one, maybe they're not homeless in three or five years. maybe their family is not chronically stressed in three to five years from them being homeless.

Maybe they are not using drugs or kind of get pulled into other things like prostitution or something like that, which I've seen happen. So when I see a program like this and I think, you know, okay, here's some smart people who are really thinking through how to both educate but also do the research, also empower professionals to do good care. So it's a pleasure having you guys on. And thank you for reaching out to me. And thank you for the write-up. There's a write-up that goes with this. It'll be on Psychiatrypodcast.com. It'll have all the links to everything that we've talked about.

It's currently at 16 pages. We'll see how it gets expanded in the next week or two before we post. All right. Thank you guys and we'll leave it there. Yeah. Thank you so much. Appreciate it. Thank you so much.

It's been great.