Pathways to Recovery: Psychosis and Schizophrenia

Pathways to Recovery: Psychosis and Schizophrenia


Transcript

Dr. Heinssen: People may start not so much by hearing voices, but they might hear sounds or their name being called, and they can look around and check and see, “Well, I don’t know where that came from.” They may become a little bit anxious and attentive of what’s going on in their environment, and maybe they start being a little afraid and suspicious that people around them might be observing them or monitoring them in some way. So changes in all of those areas would be some of the early signs that something is amiss.

Dr. Gordon: Psychosis, a condition marked by a loss of touch with reality, is distressing for both those who experience it and their loved ones. If left untreated, psychosis can have serious impacts on people’s lives. But the good news is there’s hope. Hello, and welcome to Mental Health Matters, a National Institute of Mental Health podcast. I’m Dr. Joshua Gordon, Director of NIMH, and today we’ll be talking with Dr. Robert Heinssen, a leader in the development and adoption of coordinated specialty care for treating psychosis. In this episode, we’ll learn about the signs and symptoms of psychosis, talk about coordinated specialty care, and discuss how NIMH research in psychosis and schizophrenia fundamentally changed the healthcare landscape. Welcome to Dr. Robert Heinssen of the National Institute of Mental Health. Bob, it’s a pleasure to have you here today.

Dr. Heinssen: Dr. Gordon, thank you for this opportunity, and I am equally pleased to be here with you.

Dr. Gordon: Today we’re going to talk about psychosis, which is a serious mental condition, of course. Can you talk about what that is exactly?

Dr. Heinssen: Sure. So, psychosis is a condition that affects an individual’s perception of reality, their thinking, and their functioning. So to unpack that a little bit, people who are experiencing psychosis may see or hear things that aren’t apparent to other individuals. They may have difficulties in their thinking in terms of memory or concentration. Those difficulties may impede their ability to converse with somebody in a fluent way, which has some impact on the person’s social relationships, interpersonal relationships. And that can get to be a problem in situations like school and work.

Dr. Gordon: It sounds like it’s a real challenge and a burden for those who have it. What causes psychosis?

Dr. Heinssen: Well, there are a variety of pathways to psychosis. You could have a medical condition or an acute infection, a fever that would, in some cases, cause some of these symptoms. Sometimes abuse of substances or alcohol can cause psychotic symptoms. And there are some conditions that are independent of those causes that are mental disorders that start usually in late adolescence and, if untreated, can progress into the person’s young adult and adult life.

Dr. Gordon: One of the mental illnesses we often think of as associated with psychosis is schizophrenia. Can you talk about the relationship between psychosis in general and schizophrenia specifically?

Dr. Heinssen: Sure. So, schizophrenia is a very disabling condition, but it includes among the symptoms of that condition, psychosis is a central feature. To make a diagnosis of schizophrenia, professionals require a period of time where psychotic symptoms are present before they’ll make the determination that it’s clearly schizophrenia. So, for a young person, some of those cognitive problems and perceptual problems might become a barrier to them functioning effectively in a school situation. The anxiety and distress that they feel may cause them to withdraw from other people around them, their friends, other students, even their family members. And that would create the social difficulty and isolation that is often seen later in schizophrenia. And again, without intervention, this can spiral into a set of symptoms and then functional problems that really impede the person’s ability to achieve expected developmental milestones of education, relationships, work, and so forth.

Dr. Gordon: So psychosis, and in particular the psychosis that accompanies schizophrenia can be devastating. It can really prevent people from being able to lead normal lives.

Dr. Heinssen: I think devastating is the right word. It’s devastating for the individual who is experiencing these symptoms. It’s devastating to family members who observe changes and often are unsure of what is driving those changes.

Dr. Gordon: What’s one thing you’d want people to understand about psychosis?

Dr. Heinssen: One thing I’d want people to understand is that behind the symptoms are human beings that have hopes and dreams and aspirations just like the rest of us. The symptoms sometimes create a barrier between the person with psychosis and others. If you look behind those symptoms, you see the promise of a human being, of an individual who wants the same things that you want out of life and has the same aspirations, the same type of goals, and the same type of prospects. So if we look beyond the symptoms to the human being, we’ll perhaps have more compassion to offer this kind of assistance that help people get to the kind of futures that we all want.

Dr. Gordon: Can people recover from a psychotic episode? Can people get better?

Dr. Heinssen: So, Josh, a little bit of history here. If you asked me that question in 1990, I, like most mental health professionals, would say, “Well, people will get better with treatment. Their chances for full recovery are probably slight.” And that was the message that healthcare professionals delivered in the late 1980s, early 1990s. But through research that has identified a critical period for intervention in the early stages of psychosis, we now have a very different story, a much more optimistic story that early intervention can really help people gain control of these symptoms, to get back on track with things like school and relationships and work. And with enduring care, over time, they can expect to lead productive, fulfilling, and meaningful life. So yes. Short answer, yes, recovery is possible.

Dr. Gordon: Tell me about ways that we might be able to help people recognize that something is wrong.

Dr. Heinssen: It’s not always clear that something that it’s a start of an illness or a disorder, it could just be people might say the child is going through a phase or having a rough spot, but educating the individuals who are experiencing the condition, the parents or caregivers who were surrounding them, the health care providers that would be the first professionals to come in contact and then mobilizing our healthcare system so that there are open doors when individuals present for a consultation and potential care that they have rapid access to those services, that the services can rapidly perform an evaluation and then, when indicated, can rapidly start the treatment. All of those things reduce the interval between the onset of symptoms and the initiation of treatment. And we know from NIMH-supported research that intervals, often called the duration of untreated psychosis, is an important factor in determining how well people will respond to treatment and to what extent they will recover in the long term.

Dr. Gordon: So it’s important to detect risk for psychosis early because getting people into treatment early means that they can have better outcomes.

Dr. Heinssen: Yes, time is our enemy. The faster we can identify and intervene, the much more potent are our existing interventions.

Dr. Gordon: Let’s say someone does have psychosis. They have schizophrenia, so not necessarily the first episode. What’s the role of medication and other forms of treatment for individuals with psychosis?

Dr. Heinssen: We do have individual treatments that do help with components of the experience of psychosis. So antipsychotic medications are an effective strategy for dealing with some of the perceptual problems, the hallucinations that people might be seeing or hearing things that others don’t see. They are all also affected with some of the distortions and thinking, some of these ideas that others are monitoring them, there are suspiciousness or worries in that regard. Antipsychotic medications can help with that component of psychosis. Psychotherapies, particularly cognitive and behavioral psychotherapies, are a very effective way of dealing with the distress that people feel and for managing the disruption that has occurred in their lives.

The cognitive and behavioral therapies can help the person, one, come to terms with the experience that they’re having. It can reinstill an optimism that recovery is possible and it can help them map out a treatment plan that will set out a roadmap and goals for resuming their normal activities. In addition to that, we know that family education and support is very crucial in helping the family be a support to the individual and help them as they negotiate or navigate their recovery from these episodes.

Dr. Gordon: An important effort in understanding how best to care for these young people who are experiencing their first episode of psychosis was funded by NIMH. The recovery after an initial schizophrenia episode or RAISE Study. What were the main findings? What was involved in getting that off the ground?

Dr. Heinssen: So, a little historical context. By the late 1990s, researchers throughout the world were actually recognizing this idea that early intervention in this critical window could make a real difference. It could help people recover from their initial episode of psychosis and could put them onto a path of more normal functioning. So there were a number of research studies that were exploring how this could be done, and in those, they were testing various models that had these multiple components to address the various symptoms of psychosis. So a number of us at NIMH were looking at these results and thinking, if this could work in the United States, this really could be a very big advance for young people with psychosis and their families.

So three research aims, feasibility, effectiveness, and scalability, were at the heart of the recovery after an initial schizophrenia episode initiative. And NIMH launched that in 2008 and we ended up funding two studies. One of them was a comparative effectiveness study. This took place in 34 community clinics throughout the United States. And 17 of these clinic programs were assigned to that type of coordinated treatment. And then the remaining 17 clinics provided treatment as usual. That study addressed the questions of feasibility and effectiveness. And then a second study, an implementation study, explored what would be potential barriers to implementing such a coordinated approach in public health settings across the U.S.

And that study identified barriers, but more importantly, they developed approaches to be able to surmount those barriers and make it possible that this intervention would be able to be delivered with fidelity and to be done on a broad scale. We had stunning success in both studies. Coordinated treatment was more effective than treatment as usual in terms of improving quality of life and reducing distressing symptoms, and helping individuals return to school and work. These programs led to the adoption of coordinated specialty care by the states of New York and Maryland immediately after the research was concluded. So those two studies set a foundation for a broad implementation of this new approach across the United States.

Dr. Gordon: Can you talk about what effect the RAISE Study has had on mental health care, in particular for health care for first-episode psychosis in the U.S.?

Dr. Heinssen: Sure. I’ll start this by saying that NIMH science has been a very critical element in this success story. But it’s one element and one thing that I learned is as terrific as our science is, if we don’t have partnerships with key stakeholders, it’s not a given that science will actually make its way into the healthcare system. So in this case, we did this study in the context of growing awareness among federal partners, among advocacy groups, among private foundations, that early intervention was really a new concept that should be exploited.

And we worked very hard with all of those stakeholders to be able to translate the science into new clinical practice. And hats off to our partners at the Substance Abuse and Mental Health Services Administration who embraced this new scientific approach and partnered with us in disseminating the new approaches, in training people in being able to implement them, and then providing the resources or channeling the resources that Congress provided through their community mental health block grant to fund these new programs, these coordinated specialty care programs via a set aside to their block grant program.

So all of this came together, the science, the partnerships, and the coordinated effort to move the science into practice. And today, it’s a much different world. In 2008, we know that there were only two states that had committed to early intervention as a state policy in mental health care. And we estimate that there were only about a dozen high-quality specialty care programs in the United States at that time. A dozen years later, there are over 350 of these programs in all 50 states, and they today serve tens of thousands of young people each year.

Dr. Gordon: Can you compare what treatment and prognosis is like for individuals experiencing their first episode of psychosis before and after RAISE?

Dr. Heinssen: So if we look back in the United States in the late 1990s and early 2000s, in academic circles, there was recognition that early intervention was the way to go, and people were studying ways to do that, but that message had not gone to the broader community. So if you were somebody experienced a first episode psychosis, in all likelihood, your symptoms would really not be recognized until some sort of crisis occurred that required either an emergency department visit or an unplanned inpatient treatment, or in some cases, contact with the police that might result in arrest and involuntary commitment to one of these treatment facilities.

Once you got into treatment, the chances were that you were going to be evaluated and treated by somebody who didn’t have a wealth of experience in early psychosis. So your care would likely be fragmented. It may not have been up to the guidelines that existed for medication treatment at that point, and it would not have been continuous. You would have been discharged from an inpatient facility and left on your own, perhaps with the help of your family, to try to navigate outpatient services. Now, today, the best-case scenario is very different. In these programs that have established referral networks in the community, very often, a person can be referred to a first-episode psychosis program before an initial hospitalization. So the differences are really kind of night and day, and the outcomes are also night and day.

Dr. Gordon: Early intervention is key. Before RAISE, before these clinics, did people have to wait a long time for care in order to get it?

Dr. Heinssen: Yeah. In the United States, believe it or not, a person could be psychotic for anywhere between one and three years.

Dr. Gordon: Years?

Dr. Heinssen: Years.

Dr. Gordon: Wow.

Dr. Heinssen: In the RAISE program, the average amount of time a person waited was 18 months. And think about that. Psychotic symptoms, they’re very dramatic, and they’re very disabling, and they are associated with a lot of distress and pain. And for people experiencing those symptoms for that period of time, it’s just astounding that was the state of care.

Dr. Gordon: So RAISE showed us that we can reduce the time to treat psychosis, and we can get people better and keep them better if we get them into a coordinated specialty care treatment and ensure continuity of care. What has NIMH been up to try to solidify that success of RAISE, to make sure that we’re doing the best we can to treat individuals in their first episode of psychosis?

Dr. Heinssen: So the results of the RAISE study, the principal results started to become available around 2014, 2015. I think at that point there were maybe somewhere around 50 or 60 of these programs nationwide. So we started thinking there’s 50 or 60 of these programs, and it would be great if we had 50 excellent programs in the United States. But imagine what would happen if you linked those programs together so that they could talk to one another, they could share data, they could share learning. So that became the beginning of an idea that we imagined, an Early Psychosis Intervention Network, or EPINET. And the idea started in 2015. And then we took some lessons learned from the RAISE program in developing that idea. We started funding regional networks in 2019.

So this would be a network of like-minded programs that offered services within a defined area. And then we have linked those regional networks through a national data coordinating center. And so together, this enterprise embraces 8 regional networks, 101 community clinics throughout the United States, well, in 17 states. And we’re anticipating that somewhere between 3,000 and 4,000 young people with first-episode psychosis will be enrolled in these programs.

Dr. Gordon: Wow. So 100 clinics, thousands of individuals, all participating in an effort to really understand how best to take care of people with first-episode psychosis, what are they learning?

Dr. Heinssen: I like to think of this. If you’re a person with cancer and you go to a cancer clinic that’s affiliated with a research program, you go in there and you know that information about your care is going to be utilized by that clinic to help them improve the quality of the care that they offer and then also to offer you opportunities to participate in research that may benefit others by generating increased knowledge about cancer and its treatment. We’re building that same kind of culture within the EPINET clinics that people come in there and they’re first struck with this idea that this is a different experience. The person who’s entering this program will know that I’m in a program that looks at its procedures continuously with an eye towards improvement. That’s the kind of system that a person will be entering in.

Dr. Gordon: So these learning health care systems, these clinics, they’re not just providing care, they’re asking the questions that will help them provide better care in the future. Bob, what’s it like for a patient who’s in one of these first episode psychosis clinics, from their point of view, what are they getting?

Dr. Heinssen: So they’re getting access to a treatment team. So it all starts with conversations about what’s happened and what’s been disrupted for you. What would you like to return to or what would you like to get out of treatment? And then here are some of the tools that we have that we can make available to you. And then that conversation with the treatment team leads to an individualized treatment plan that usually is a combination of the medication, the psychotherapy, the family intervention, and these rehabilitation or supported employment and education activities. Then the interesting thing, what I hear from people who run these programs, young people are interested in getting back on track with their lives. And they embrace this as their job. Their job is to get better and get back on track.

Dr. Gordon: So how long will a person stay in one of these first-episode psychosis clinics? How long will they be in a program like that?

Dr. Heinssen: I would say between one and three years is probably typical. Most programs organize themselves around two years. Important to note that the treatment plans are individualized. So this is not like you’re going through a program and that you have the same program over the course of a year or two years. You have an individualized treatment plan, and that plan adjusts continuously based on your recovery, your emerging needs, and so forth.

Dr. Gordon: What inspires you as a scientist?

Dr. Heinssen: So before I came to NIMH, I worked in a psychiatric hospital that was the center of a community treatment program for serious mental illness, for schizophrenia. And I ran a treatment program for adults with serious mental illness, several hundred adults. And these programs, I thought they were quite good in embracing a lot of the science-based treatments that were available at that time. I was very proud of the fact that we were able to move people out of hospital settings into the community and to help them lead independent lives in the community. One day, I was giving a talk about this treatment program and what was available to people with serious mental illness, and I gave the talk. I was very proud to talk about our programs, about how they were science-based, the outcomes we had achieved. And I was feeling very good about this meeting. There was a long line of people who wanted to speak with me afterwards.

The last person was somebody who looked very familiar to me. The woman introduced herself and she said, “Dr. Heinssen, you might remember me. My son so-and-so was in your program.” I immediately remembered who she was talking about, and I was thinking, “Boy, this is going to be great. He did so well.” He was a young man who had had schizophrenia for several years by the time he came into our program. But we had helped him to achieve his goal of returning to college. He was going to community college. He was taking a course. He was living in an assisted living facility, but he was living in the community. And he was also working part-time in a grocery store. And I thought this was a great…this is a great outcome. And I was waiting for this feedback, boy, what a great outcome. And the woman started crying and she said, “I know I should be grateful, he’s doing so much better than he was but we had hoped for so much more.”

And that really arrested me thinking that on the one hand, we did the best that we could do given the current state of knowledge, but hubris was not called for in this situation. Humility was called for. I had the opportunity to come to NIMH very shortly after that, and when I had the opportunity to jump on to this early intervention research, that mother’s story was in the back of my mind. Her voice was ringing in my ears that we had hoped for so much more. And I thought, “There’s so much more that we need to do.” That was the initial impetus and that’s been the thing that has kept me in the race for as long as I have been, that it is only through research and then through the hard work of implementing the research that we can hope for better outcomes. That really has been the motivation for me over these 22 years. So to that woman, if you hear this podcast, thank you very much. You changed the whole trajectory of my career.

Dr. Gordon: This concludes this episode of Mental Health Matters. I’d like to thank our guest, Dr. Robert Heinssen, for joining us today. And I’d like to thank you for listening. If you enjoyed this podcast, please subscribe and tell a friend to tune in. If you’d like to know more about psychosis or coordinated specialty care, please visit nimh.gov. We hope you’ll join us for the next podcast.



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