First Psychotic Episode by Dr. Alex Kopelowicz

good afternoon you know as a speaker you usually need to find out when you're gonna actually do your talk because first of all it's always dangerous to do your talk right after lunch right because you got a full belly and people kind of not out but it's a double whammy after a movie like that it's such a powerful experience and now you have to follow somebody like that or something like that it's really challenging especially when you're bringing it down to a kind of an educational level so maybe we'll keep it a little bit like a little I don't know lighter hopefully and and something that we can benefit from so again it's really not meant to be a didactic presentation I was asked to talk a little bit about first episode psychosis it's been my area of research for a long time it's been my area of interest actually since I was a teenager and I'll talk to you a little bit about that as well but before I go to too much farther I just wanted to thank Linda and Sarda for inviting me to come out here today and talk with you all it really is it's my passion and as well as my vocation to work in this area and so if I can share some information with you today that would be great and I'm also looking forward to later this afternoon when we have our panel discussion for any kind of Q&A to go over some of these issues in more detail okay so let's start with and I think in most of this audience I'm sure is very familiar with this but just to be real real safe about this I use these slides quite a bit when I work with families who are just having folks with schizophrenia first episode schizophrenia and they really don't know what is going on so I try to keep it as basic as possible so forgive me if many of you know a lot of this stuff I just want to give you the sense of what it is that we we do when we work with families who are first getting educated about psychiatric disorders so I try to stop start with instead of diagnosis like schizophrenia I start specifically with psychosis because that's what people really see are the symptoms of psychosis and I start very simply by psychosis is really what that means is that so it's any of a number of symptoms that indicate that someone has lost contact with conventional reality so more specifically the kind of symptoms were talking about the three big classes that we mean when we talk about that and it was interesting that each of the different people who were suffering from schizophrenia or from some sort of psychiatric disorder in the movie all described very similar symptoms that I'm going to be talking about now so that would include things like hallucinations which is perceptions that are not based on outside external experiences so hearing things that other people can't hear seeing things that other people can't see and you notice that each of those or several of those individuals mention that delusions are false beliefs or mark suspicions of others that again cannot be confirmed by reality nor can be shaken with rational argument and you heard quite a few of those individuals on the movie talking about some of their beliefs that they had about demons and things to that effect and then finally disorganized thinking jumbled thoughts difficulty concentrating a very typical symptom of psychosis where a person may have some thoughts in their mind they can't clearly express them and so it comes across as confusion disorganization and again several of the individuals on that in the movie talked about that as well all right now we've heard that the term that a lot of these illnesses are biologically based but when you say that what exactly do you mean by that and what I'm trying to get at in this slide is to talk about really where where the biology affects an individual's ability to interact with their environment so the psychosis results from a biologically based sensitivity to sensory stimulation many people are overwhelmed by things that are happening to them they don't really process information in an orderly fashion for example right now you are all listening to me talk but there are many other stimuli that are going on in the room that your brains are able to kind of put in the back and focus on what I'm talking about or focus on specific issues that are what are salient at the moment folks that have these illnesses have a predisposition to not be able to do that filtering so they may hear many different things going on at the same time see many different things that are happening at the same time and their inability to process information efficiently leads to the experience of hearing things that other people can hear or believing things that other people don't believe many of these sensory over stimulation situations are a result of prolonged stress strenuous demands being overwhelmed by the experiences that are occurring to them many times they have to do with rapid changes that are occurring in their lives complexity and trying to process that information all kinds of social disruptions it's very common for people who are in the middle of a change may be for example going to a new college is a very typical time when someone is developing an illness like schizophrenia or even bipolar disorder and then the use of whoops not sure what happened the use of illicit drugs and alcohol can make that experience much much worse so if you're trying to process information and then there are drugs or alcohol in your system it makes it that much more difficult to process that information and then we talked a little earlier about or actually the movie talked quite a bit about the idea of negative emotional experiences that people can be overwhelmed by having negative experiences in their lives that they're not able to cope with and there's their sense of how to deal with it is to withdraw from other experiences and of course that tends to make things worse in the long run okay so what are the signs that we're talking about when we talk about psychosis and it's interesting is that psychosis doesn't come along from one day to the next it usually comes pretty gradually so the earliest signs sometimes are not that easy to pick up in an individual who's never experienced psychotic symptoms so what we normally see are things that are marked changes in behavior thoughts and emotions such as unusual perceptual experiences rather than talking about discrete hearing voices it may be more like whispers or it may be not quite hearing something that is in the back of your mind and not quite understanding what it is we're seeing things that seem like don't exactly make sense but are not clearly you know out of the realm of the ordinary heightened perceptual sensitivity that means where sometimes colors seem particularly vibrant and seem like unusually meaningful like something that looks particularly special and not exactly understanding why that might be almost like a dreamlike state that occurs while somebody is awake sometimes people have what they call magical thinking which is not exactly psyche in the terms of believing things that aren't completely true but believing in things that normally somebody might not believe in so for example here's a person who's never had particular beliefs and the extraterrestrials or in paranormal experiences and all of a sudden are quite sure that they saw a ghost or they continue to see other type of spirit of their dead grandfather or something to that effect again it's not that those beliefs aren't possible that people could have that and think that way but that if they all of a sudden come up it's unusual inserts to make you think about particular the possibility of this could be the earliest signs of a psychosis unusual fears disorganized or digressive speech as we were talking about a little bit earlier someone who's not making clear sense as their thoughts don't seem so clear uncharacteristic or peculiar behavior I like that one fellow from Uganda who was talking about he doesn't get invited to weddings because people think he's gonna take off all his clothes at the weddings you know that kind of stuff and then reduced emotional or social responsiveness this is really kind of interesting so as you know when we are all having social interactions you know when you're talking to someone you expect a response that someone nods their head or makes a comment or something that effect many times when people are in the midst of one of these illnesses that are in their own mind and do not realize that it's time to interact with someone else and have to give them feedback so that we know that we're in a normal social situation that's a very common experience in the earliest parts of a psychotic process other warning signs and where it really starts to get clear that we're moving in in a pathological direction is when there's a significant deterioration in functioning so example someone who's really good student they're in school they seem to be a straight-a student and all of a sudden their grades aren't doing so well all of a sudden they're not that interested in studying they're not that interested perhaps and even it's socializing with their friends a variety of things that really do seem very dramatically different than a person had normally been differences also personal hygiene is a very typical one many times parents will come to me and say you know my son was meticulous and how he used to clean himself and now he takes a shower like once a week and it's always because I push them into doing that that maybe even before Frank psychosis shows up so again it's very common in the pro normal phase in that period of time where we don't quite know it's psychosis but it's heading into that direction and then decreasing the ability to cope with life events and stressors and what you really see at the end of the process of the prodrome is this withdrawal from family and friends so again the point is that it doesn't come all up out of the blue it oftentimes is a gradual process that could take weeks months sometimes even years before people realize that this is a downward course that needs to be addressed okay so most commonly when families do see it early on in the process and they'll come to a mental health professional or some other counselor they're gonna want to know is this this just a stressful kind of a situation or is it the start of a mental illness and that's a critically you know important question and one that's not that easy to determine especially because at this point and you know as what we were talking about the the need for research and figuring this out there are no blood tests for any of these disorders so it's all based on signs which are the things that someone can see and symptoms those are the things that people report it's completely based on that for now and because we have no sort of objective tests like MRIs or blood tests or something like that we have to really kind of try to figure it out as to whether or not it is something that is an illness at this point or stress and what we usually look at are those signs and symptoms how long have they been around how intense are those symptoms how much does it disrupt the person's ability to live their life when these start to get more and more severe that's when you start to suspect that this is more than just the stress of living in you know whatever the situation may be for an individual and when it starts clustering with more than one of the symptoms you know like hallucinations and delusions and thought disorder and a difficulty in communicating then it gets harder and harder to attribute it just to a stressful situation and more and more to start to believe that this is probably the beginning of a psychotic illness okay so what are the kind of things that make us jump and say look we can't wait and figure this out whether this is stress or not we need to take care of it right away well not surprisingly it would be things like somebody feeling suicidal or homicidal especially if there are specific threats or plans as you can imagine as the movie highlighted far more common is the issue of suicidal versus homicidal I think the movie made it very clear as that people who have serious and persistent mental illnesses are much more likely to be the victims of violence rather than the perpetrators of violence it is a terrible shame that in our society when something horrible happens to and somebody's involved with a violent episode had become it's a media frenzy what does not get on the media anywhere near as often is like what happened to that movie makers dad where suicide is an incredibly common end result of people who have serious and persistent mental disorders so when you see things like disorganized and bizarre behavior hallucinations or delusional thinking like we were talking about this disorganized communication extreme withdrawal this is the time when you really need to you know intervene and get involved in trying to help someone get the best care that they possibly can as quickly as possible so if we've decided that we've gone beyond the prodrome that earliest signs where you're not quite clear as this illness or is this stress and we now know that we're in a first episode of psychosis now you're looking at specifically the diagnosis that has Glenn Close insist that you should say out loud you know not being ashamed of it is that this is a medical illness called schizophrenia and as I think one of the other people in the movie mentioned this is a biologically based illness that affects the most complicated organ that we know of and that is the human brain so the illness affects all the different components of the brain it can affect thinking perception mood and behavior we like to distinguish just for our you know communication purposes between two kinds of symptoms and we'll use this term so that I'm all introduced it and I'm sure most of you know about it but we're talking about the difference between what we call positive symptoms and negative symptoms and when I say positive I don't mean something good positive symptoms are not a good thing positive symptoms mean what people have above and beyond their usual personality so for example hearing voices above and beyond normal that would be a positive symptom paranoia believes that someone's trying to harm you that's a positive sentiments more than what you would expect in someone to experience and so those are the two most common positive symptoms the flipside is what we call negative symptoms which are beyond being negative in the sense of you'd rather not have them what negative means is it's sort of a lack of something so normal personality lacking let's say motivation lacking a desire to be with other people lacking you know emotional experiences with other folks that's what we mean by negative sentence so it's something that is missing from normal personality something that somebody might have had once but when the illness comes about now they start losing some of those things they had so I'll use the terms positive and negative symptoms to mean these two different categories of symptoms okay all right as many many times mentioned in the movie which was great to see it's really important to emphasize that this is not a rare illness schizophrenia happens to approximately 1% of the population so the movie maker was talking about in the nationwide but internationally but the United States we have 300 million people so presumably about 1 percent or 3 million people in the United States well at some point develop schizophrenia it's an extraordinarily common thing 1% sounds like not much but 3 million people is a lot of people and of those one-third of all mental health care spending in the United States is on schizophrenia treatment mostly Hospital based treatment so there's a lot of money that goes into the treatment of schizophrenia at its most severe which is when people need to be in the hospital there's also indirect cost of schizophrenia the fact that people oftentimes cannot work the time and money spent by care givers unfortunately law enforcement is becoming much more involved again with the lack of resources dedicated to mental health care you often have police as being first responders in psychiatric situations and finally the World Health Organization rated schizophrenia s' the second most burdensome disease in the world in other words it represents 15% of the total burden of disability in on all diseases only second to vascular disease so incredibly important and incredibly sapping the energy of our you know of our world of our economy so therefore obviously necessary to you know intervene as soon as possible so again let me rotate back that's the social implications but I wanted to make sure that you all are familiar with what we know although the brain is still pretty much of a mystery we do know some things about what is happening in the brain of the person who is developing a psychotic illness like schizophrenia so I mentioned earlier the interaction between a vulnerable brain because some people's brains are more likely to develop an illness like schizophrenia and we're not exactly sure why even though we think that the genes of an individual their DNA is very much part of the story but it's only part of the story because in addition to the to the genes that lead to certain vulnerabilities in the brain there are also how sensitive that particular brain is to stress and by stress I don't just mean anxiety or nervous things that happen in your world but we're talking about environmental stressors anything that could happen to an organism so oftentimes when that first episode of psychosis comes it's during a particularly stressful period and again we're by stressful I mean the organism being stressed alright now it turns out that as everybody here in this room knows stress in and of itself is not a bad thing there are needs to have stress I mean for example when you're lifting weights you got to push on some weight to be able to build your muscles up so there's an amount of stress so to speak that's good for you right but of course if you pushed too much weight you're gonna pull a muscle you might break an arm you can make do all kinds of things so the issue when we're talking about stress is to try to figure out what the optimal amount of stress is on a particular organism and that's what this is talking about there's an optimal relationship between arousal that is pushing yourself in a particular way and to end attention and to be able to focus your attention on a particular topic so in in order to pay attention to certain things we need all of us need to be aroused on some sort of sensory level otherwise you're asleep you're not focusing on what you need to but when the individuals that are in a psychotic state they're over aroused like I was giving you the example of not being able to filter out the important if the information that's important from the information that that is extraneous and so that makes it hard to pay attention to what really needs to be focused on and other information relevant stuff is missed so with negative symptoms like the part where I said lack of motivation lack of energy a person is slow to register that information and/or has poor attention in the first place so there's a biological basis for both the positive and negative symptoms that we've been talking about this is just a graph to show you that you don't want to have too low where you have your attention is too low so you're not really paying much attention nor do you want to have too much arousal where you have distraction being much more easier this optimal level of arousal is what's critical not just for people who have serious mental disorders but for all of us but when we talk about serious mental illness and the treatment of it what we try to do is find that sweet spot where people feel that they can handle a certain amount of stress but not too much that overwhelms them and precipitates more symptomatology we'll talk more about that as I talk about the treatment programs that we use for people with first episode psychosis okay so a little bit about the brain so for those of you who are not familiar with it so this is the front of the brain and I'll talk about each of the different components this area of the brain is called the prefrontal cortex and I mentioned that because it is a critically important factor in the development of the symptoms of schizophrenia oh there are other parts of the brain that are involved as I'll show you in a second but I wanted to start with showing you probably what is the most specifically problematic in individuals who have psychotic illnesses like schizophrenia so why is the prefrontal cortex so critical and why is it so central to the pathology involved with schizophrenia well because the prefrontal cortex is cortex is actually really what makes us human it's really the part of the brain that distinguishes humans from every other creature on earth and that's because if you notice what the functions of the prefrontal cortex are they're the things that really is what makes you know give us gives us our humanity establishing a cognitive set he's just kind of getting ready for whatever the world's about to bring us get us used to for example you come into this room and you know this is about listening to a talk right so your cognitive set is now focused on I have to pay attention I have to think clearly I probably don't want to be doing a lot of other different things that's a cognitive set not any there are no other species that have the function of establishing a cognitive set for the purposes of learning for example problem-solving abilities planning abilities attention initiative motivation integration of thought and affect and mental liveliness notice that these are all processes that are critically important especially as an individual is working through their life going to school getting going to work having interpersonal relationships and these are precisely those functions that have a problem when individuals develop illnesses like schizophrenia but that's not all unfortunately there are other components of the brain that also seemed to show pathology in folks that have schizophrenia a second area is the so-called limbic system which is the area inside the deeper part of the brains that's involved with the integration of thoughts and feelings really kind of the emotional center of the brain so this is the cut of the brain if you like cut it in half like this and look inside and right inside in the middle of it is this area this area is called the limbic system it's called limbic because limbic means ring in Latin and so it's sort of ring shaped part that involves a sort of variety of different anatomical structures and they're responsible for a variety of things it's a very primitive part of the brain it's involved with emotional regulation it is the source of basic effects basic emotions it integrates thoughts with emotions and it supports memory and attention and again as many of you know individuals with psychotic illnesses quite often make some you know differences in ability to process information and connecting their thoughts and their feelings with their ability to understand what's going on in the environment around them so unfortunately the limbic system is critically involved and is one of the targets for the treatments that we use especially the pharmacological treatments that we use for positive symptoms okay the temporal lobe this area here in purple is responsible for language speech and hearing so not surprisingly if we're talking about an illness in which people hear things that other people can't hear see things that other people can't see it's not a surprise that language and speech are critically affected and so that part of the brain is an important one to focus on specifically even within the temporal lobe there is an area called the hippocampus which is right over here and that is responsible for short-term memory and attention again we've mentioned before about how difficult memory and attention are for individuals with psychotic illnesses there's a lot of evidence to show that there's damage in the hippocampus that develops in people who have schizophrenia so a question that I often get asked by families particularly cuz many of them they come they're ill relative is someone who has who's maybe 1518 years old something like that and they say well why now what's going on so I try to explain to them that it's very common that psychosis would occur in their first episode during adolescence period and the reason for that is because adolescence is a very challenging time for individuals not just from a social point of view but also from a hormonal point of view and from a brain development point of view it happens to be the time in which that part of the brain that pre cortex we were the prefrontal cortex here that we're talking about that's when it actually develops that's the part so although your prefrontal cortex is there from the very beginning when it starts to really function and sort of to use the computer term come-on line is right during the time of late adolescents there's a part of the brain that's or part of a mechanism of the brain called myelination where as a person develops myelinated neurons that is the ones that function more efficiently that's when those parts of the brain get used more efficiently and when the myelination occurs in the prefrontal cortex which is the last phase of brain development is around the age of 15 to 18 years old so it's not surprising that as that part of the brain which we've just described as being dysfunctional when it's supposed to come online it's not a surprise that that's when some of these symptoms start to manifest selves at least that's how we understand the timing at this point in time now that's not to say that everyone who develops these illnesses do it in that in that timeframe but it's very very common that the ages from 15 to 2025 is when the first symptoms of these illnesses start to manifest themselves so why do we talk about all this stuff and identifying the illness well obviously the real reason is because we think that it's a good idea to get into the illness as fast as we possibly can it's a basic principle of medicine right we've been using the analogy of diabetes and of blood pressure and whatever and we know why do we want to treat diabetes as soon as it happens well because if somebody lives with diabetes for a long enough their blood sugar stay too high and it actually does damage to their end organs their kidneys their eyes their legs etc same thing with high blood pressure if you don't treat high blood pressure early people have too high of a blood pressure and that leads them to things like strokes and heart attacks it's not any different with mental illness if you can get in there as early as possible you can have a significant impact on outcome you can actually have a better chance of remission I want to be clear about this what remission means is not cure what we mean by remission is symptoms in control it's the remission of symptoms they're no longer experiencing hallucinations or delusions that doesn't mean the illness is over it means that it's in good control just like you were hearing earlier about diabetes when someone sugar is in good control does that mean that they don't have diabetes anymore no it doesn't it means that they do but they're taking care of it right and it's going going well for them and they found that balance of diet and exercise and right medications that keep them doing okay but it doesn't mean that they cured the illness but we do know that if you intervene early with psychosis you can have a better chance of a full remission it also means you can use lower doses of medications interestingly enough the doses that we use in the first episode are usually much lower than the doses that are used 5 or 10 or 20 years later for people who have not had treatment on a consistent basis and so you can imagine that's probably a good thing because the lower the dose of the medicine the less side effects associated with the medicine which is obviously one of the big reasons why people don't like to stay on medicine so we try to minimize how much side effects these medications can cost cause there's also a shorter time the remission in that first intervention it's amazing how quickly people symptoms we've had patients who get brought in on their first episode to a psychiatric emergency room and they may end up spending 24 48 hours get on some medication and they go home and they're doing well it's really unbelievable how quickly the symptoms can respond when you catch it real early in the process unfortunately it's a double-edged sword because when you send them home and they do better what's their first belief like a week or so later this never happened throw the medication away I'm fine it was all okay so it's actually a little bit of a double-edged sword that it's so quickly responds because people think of it like sort of like you think of a bacterial infection right take a week of ampicillin and you're all done it's not the way it works but it's real important to intervene and to talk to the patients and their families about okay I'm glad it worked out really well for you but that's even more reason to stay on that medication and see how it does for you anyway also there's a reduced risk of relapse if you intervene early again if you educate patients and their families as to the need to continue in treatment and then this is the really important part first episode people who could discontinue meds have a four times greater risk of relapse than people who don't so if you literally took people gave them the medication and said stay on it and that they do compared that if they don't they're much much much more likely to come back with the symptoms again if they stop taking their medication so really important early and sustained intervention all right so we have some data this isn't just I'm making this up there's some data that's come from a variety of different places this is some research that comes out of Canada where you know it's funny we were talking about this at the table we're watching the movie you know it's not a giant surprise that France has a really good Mental Health System anybody have any idea as to why if you think it's the bread or the you know the coffee or something why is it that the French seem to have a really good mental health system huge taxes and socialized medicine that's what it is I mean we can argue all we want about what it's good about it was bad about it and the downsides but I mean you get what you pay for right and so if you cost if you're going to create a system in which there is this sort of socialized approach to treatment you're gonna get these kind of better you know social safety nets I just tell you a brief aside and I may be going over my time but I think it's worth your while you know Spain also has the same kind of system as France and I've been fortunate enough that for the last five years I've hosted psychiatric residents who are doing their last year of treat of training in Spain they come to Los Angeles for a three-month rotation at UCLA and I remember the first couple of residents that came over they were absolutely shocked that you couldn't like push a button when a patient came in the emergency room you couldn't push a button and find out everything about that individual in terms of where they've gone for treatment who their doctor is when's the last time they had medications in Spain apparently because it is a socialized medicine every single Hospital is connected right so even though they're private hospitals public hospitals they all have the same you know internet connection so you can literally push and get somebody's medical record which you can imagine not a bad idea at 2:00 in the morning when somebody gets brought in by the police you have no idea what's going on imagine if you could push a button and know everybody that they've seen over the last several years and the Spanish residents look at me and say you let you guys live in the third world what is it that you can't figure this kind of stuff out so in any event that's my little political aside I'll leave it alone for now but anyway the point is is that Canada where this study was done is another one that has a social medicine kind of a program where they have higher taxes to take care of these folks and the people and first-episode programs do very well by year one seventy to seventy-five percent of the patients show remission of symptoms and that year to over eighty percent of the patients who came in are remitted again we're not talking cure we're saying that they're not having auditory hallucinations paranoid delusions and again these people are in treatment during that period of time those are rates that are very I be jealous to have rates like that in terms of our response rates in our clinics but what is the problem since we know that the way of dealing with this is identify the illness early and get treatment to people as early as you possibly can where's the hang-up where's the problem well there's a few of them and they were alluded to in the in the movie I thought really pretty well number one is poor recognition people do not recognize that what's going on is that they're having a psychiatric disorder mental illness of biologically brain based brain disease they want to attribute it to just about anything else and it's certainly in my area where I live in the in Los Angeles I live in a predominantly Latino area the number one thing that people would want to attribute the illness to or the symptoms to is some kind of demonio I don't have anybody here speaks Spanish but it's this notion of some sort of devil a devil thing happening some sort of evil spirits that have been invested in the they're ill relative and that you know what I can do is try to I don't know exercise those those evil spirits that's a very typical reaction what it led us to is working quite clearly and quite carefully with church groups with community leaders to try to help them understand okay we're not going to disagree about what the religious aspects are but when you see someone who's hearing voices whatever why don't you send them my way maybe I can help as well so it's real important to fight that poor recognition not by saying you're wrong but by trying to engage people wherever they are and if it's where they're going is to their community leaders to their church groups whatever no problem let's go find them there and help them you know make it over to the clinic eventually as well unfortunately longer duration of untreated psychosis is related to worse outcomes this is an important point that I want to make sure that people know about did anybody have an idea what the average length of time somebody experiences who has schizophrenia between the time they first have symptoms and the time they first get treatment more or less a week a month it's somewhere between five and seven years which is unbelievable and and horrible but not just you know in you know for third world countries that's the case the United States as well we're in the middle of conducting a study we just got funded by the National Institute of Mental Health to look at duration of untreated psychosis in the Latino community that I'm working we did a study for 18 months and found 50 individuals having their first psychiatric experience of psychosis and the average length of time that they had spent having psychotic symptoms was four and a half years this is in the United States in Los Angeles so it's really a big problem that we really don't identify the illness early enough the good news about our project by the way I'll just tell you a little plug for it is that what we actually got funding for it was to do a public educational campaign in that same Latino area in Los Angeles where we're gonna kind of bombard the area with radio TV newspapers community forums politicians you name it to talk about identifying psychosis in in loved ones early on in the process and we're gonna see whether that educational campaign changes the duration of untreated psychosis in that community so in any event we can talk more about that in the panel I think another big problem I hinted to earlier was the rates of medication adherence people do not take their medications and one of it is we're a victim of our own success right because somebody gets better real quickly and they say I don't need the meds anymore they stop taking it so it's important to educate people early on and then it gets high rates of drop out for the same reason I'm not sick anymore that was something bad that happened to me I smoked too bad marijuana joint whatever it was and now that's gone and I'm okay so it's real important to educate people about the chronic nature of these illnesses again these are issues it's sort of the same thing that you guys will all know about some of the reasons why people don't stay in treatment whether it's substance abuse whether it's not understanding the need for treatment side effects is a big one social support I mean I was so moved by that woman who was in Washington State who found the homeless guy whose family's real nearby and she brought him in wherever that lady is we need more of her we don't have enough of that it's very sad to see in our emergency room how many of our patients are homeless I mean that you guys probably know Los Angeles is the homeless capital of the United States there are over 50,000 people a day who live on the streets in Los Angeles and over a third of those have serious mental disorders so clearly that's going to impact on the illness okay so I was asked also to talk and hopefully get to the point yeah to talk a little bit about the raise project and so this was something that I got involved with a few years back for those of you are not familiar with it raise stands for the recovery let's see if I can find recovery after an initial schizophrenia episode and so the original project which was funded by the National Institute of Mental Health actually funded two different researchers I worked with one of them a guy named John Kane who's in New York and the project was really about identifying treatments that have been found to be effective with individuals who've had schizophrenia for many years and instead of waiting years to give them all these treatments why don't you just front-load it give all these effective treatments the medications and a variety of other things that I'll tell you about in a second and give it to them right upfront and see if that helps people with these illnesses change the course of the illness to being something that is much more likely for remission and recovery that's a very simple idea but the critical part that I thought that John Kane did a great job was instead of actually just doing it in these academic centers you know places where real clinicians don't really work he actually went out to the clinics you know typical clinics in the community and said we have these treatments we want you guys to do what do you think and so he taught clinicians who work in typical community settings to use these same approaches because what good is it if we show that it's effective if nobody actually does it in the community so it's really important not just to test that in a laboratory kind of what I like to call the ivory tower setting like UCLA and all that sort of thing but much more in a community-based setting where it's obvious that not just the people in the research will benefit but future generations will benefit because they can continue to do the same kind of work so that's what this project was all about as I mentioned it was given to two people one was this group from which was John Kane this is the group from Columbia which was a doctor named Jeffrey Lieberman they did a project more along in New York as well as in other parts of the East Coast the one that John Kane did was actually all over the country we were the West Coast site but there were sites in Texas there were sites in the Midwest sites in the north as well oh actually I forgot these are the punch of picture so these two were were I did my work is here in Southern California but as you can see there were programs that John Kane's version of the Rays project did all over the United States really spread out pretty well so it was really to generalize the effects to see does this work not just in California not just in Florida and not just in New York but anywhere that this is that this is done okay so it was a really kind of a neat project in that as I said it was done in real typical community settings not in ivory tower kind of research labs and what it did is it they instead of separating patients in a particular clinic and said okay half of you are going to get this really wonderful treatment and half of you or not what they decided to do was to prevent the possibility of quote contamination they randomized at the level of the clinic in other words if your clinic was selected to participate you could either be the one that's giving this new treatment or you're doing the treatment that you've been doing forever to see if you can compare not at the level of the patient but at the level of the clinic the worry was if I go to a particular clinic and then separate patients you get it you don't then some of the patients who supposedly don't get it they might because their clinician is doing it with somebody else so we do it in two different clinics maybe it'd be easier to compare that so that was the logic of this whole study the study actually was completed so the five years have passed pretty quickly all the data is not yet in although it is clear at least our experience we had more about 40 patients altogether that participated at the two different clinics I had one clinic that was one of the ones randomized to the new to the new project which we called navigate and I'll tell you in a second and the other one was Community Care which was typical treatment as it is always done I had one clinic that was doing it one way one clinic the other way and it was clear even though I don't have the data to show you because I'm not allowed until you know all the different statisticians do their thing but it was very very obvious that the treatment that was focused on first episode was extraordinarily effective I'll tell you what those different components were that I am allowed to do so the different component number one was a compass which is a specific pharmacological treatment approach it's not so much that we were using different medications that no one's ever used before but what the important part was is that the medic Asians were discussed in a very clear manner with the individual suffering from the illness so rather than having approach where a doctor looks at a person goes okay I think you should be on that for that many milligrams end of story which is a very typical way that many doctors approach there are their treatment this was more of what we call a shared decision-making approach where the patient the doctor entered into a conversation that occurred over a period of time to kind of negotiate what the best dosage and type of medication might be now you might say to yourself well what does the patient know about the pharmacology and all that sort of thing well not much but if they're educated by a practitioner then they will know more and then they will be empowered to make decisions at least that was the theory of this compás approach is to really help the clinicians and the patients come to a mutual agreement as to the value of taking medications and to adjust accordingly every time that there was a particular visit so it's not so much that the medications were radically different but it was the approach and how the patient was led to believe that they were part of the decision-making team what it turned out to be was that patients actually ended up on lower doses of medication that in the other group but not with a poorer outcome interestingly enough so it allowed people to be on lower medication dosages and consequently not surprisingly lower side effects and not surprisingly more likely to stay on the medication regimen so that was an important component of the process but it wasn't the whole thing there were other interventions that were important too there was a very important family education program where every family were invited to participate in individual and group multi family group sessions and I could tell you that in the study that was you know done out of the 400 families that were participating when we asked them at baseline how many of you have ever sat down with a psychiatrist to discuss the issue of schizophrenia the total number was seven percent seven percent of these four hundred families had actually had a conversation with a doctor about their ill relatives illness which was amazing so obviously everyone in the in the group had such a conversation and had ongoing conversations supported employment and education this is a a specific approach that tries to help individuals identify what their vocational or educational goals are and then it gives them a kind of a case manager we call it a job coach who will go in and teach them how to do these particular jobs and then provide support on the job to keep them in that situation it's a very effective model and it was extremely useful in our own clinic to be honest it was really fascinating because we actually used peers so other people who had mental illness mental disorders who were able to function as the job coaches and it made it a very powerful experience because each one could sort of help each other and those people who were in their first episodes could see that despite having this illness they could get on in their lives they could accomplish some of their goals because their peer their job coach had been in that same boat five or ten years earlier so a very powerful experience and then individual resilience training this last one it's kind of a cognitive therapy it's to help people cope with symptoms that don't go away with the medications so sometimes people were maybe on medications and although their voices are somewhat in the back they're not quite up front you know thinking about it they're sort of on the back burner they still bother them occasionally and so these were some techniques that people would learn on how to sort of distract themselves and not be so much paying attention to the symptoms that were still residual despite being on medications anyway I told you a little bit about this just want to cut to the to the front so the the Rays program in general that I can tell you is been extraordinarily successful again the data is not completely out but the most preliminary data about it showed something really interesting which is that the evidence for it was enough such that the federal government who did have access to the data has actually created a program where there's incentives for each state to develop raise type programs in their specific states so I happen to know that for example in in California they're building several programs that use the raise model based on the preliminary data that shows that providing evidence-based practices early on in the course of the illness can actually lead to greater levels of remission better levels of recovery and much less likelihood of laughs and rehospitalization so I think on that note I'm done thank you very much

Channel: Schizophrenia & Psychosis Action Alliance

Views: 37,112

Keywords: Schizophrenia (Disease Or Medical Condition), Schizoaffective Disorder (Disease Or Medical Condition), Psychosis (Disease Or Medical Condition), Brain Disorders

Id: CNfEmVENVNg

Length: 44min 8sec (2648 seconds)

Published: Wed Nov 18 2015