NP Notes: Patient Burden of Schizophrenia (SCZ Episode 2)

Craig Chepke, MD, DFAPA: Hello, and welcome to the Great Exchanges in Schizophrenia podcast. I'm your host, Craig Chepke. I'm a psychiatrist in Charlotte, North Carolina, at Excel Psychiatric Associates and the Scientific Director of Psych Congress. Joining me today is my friend and colleague, Desiree Matthews, also from Charlotte. Tell us a little bit about yourself, Des.

Desiree Matthews, PHMNP-BC: Thank you, Dr. Craig Chepke. My name is Desiree Matthews. I'm a board-certified psychiatric nurse practitioner, and I have a telepsychiatry practice based out of Charlotte, North Carolina. And I'm so happy to be with you today.

Craig Chepke, MD, DFAPA: And we're excited to have you here. And you've spent many, many years in community mental health, so I know you have tremendous, not just experience, but passion for working with people living with schizophrenia. And so, we want to really drill down in today into a couple basic topics. And first, I want to just talk about the course and prognosis of schizophrenia. What do the stages of progression look like generally for schizophrenia?

Desiree Matthews, PHMNP-BC: Yeah, absolutely. So, right now, I actually care for the majority of my individuals that have a diagnosis of schizophrenia. They're actually very early in the course of their illness, so I'm getting them when they're first diagnosed, their first psychotic episode, and they're discharged back to me in my private telepsychiatry practice. So, oftentimes, we're seeing individuals that are 18 to 25. And what can be really difficult is that, in these early years, these individuals are maybe just getting to go off to college. Maybe they're just moving out of their homes from their parents. They're really just getting started in life. And it's not uncommon for these individuals to have a prodrome where we see them start to socially isolate. They start to have cognitive impairment, they have mood symptoms, they have anxiety.

Oftentimes, our college kids, we see their grades starting to drop, roommates being concerned about them, professors being concerned about their behavior. So, this is a really difficult time when they're diagnosed early, families scared, the individuals with the diagnosis. Oftentimes they're confused, they may feel hopeless. So, there's a lot of mood symptoms that come along with schizophrenia as well.

Craig Chepke, MD, DFAPA: Such a great point, and I bring that up a lot, is that this is not just an illness of positive symptoms. There's the negative symptoms and cognitive dysfunction that you mentioned, but then also a kind of shadow, fourth pillar, of the mood symptoms, anxiety, the general psychopathology symptoms as the PANSS scale, the Positive and Negative Syndrome Scale, puts it. And we need to attend to all of those comprehensive symptoms to really help people with schizophrenia. So, that's a great outline of what it looks like earlier on. How often do people actually get back to that premorbid state of functioning, what we would call recovery?

Desiree Matthews, PHMNP-BC: Yeah, so I think, first, we have to kind of think of what is recovery? Is this just looking at kind of a reduction in PANSS total score or looking, as you said, those negative symptoms, positive symptoms, and the general psychopathology symptoms of schizophrenia? Or are we talking about functional recovery, getting back to college, working, having a family, participating in society? We do have a couple studies, international studies, that look at a longitudinal, so 15 to 25 years. And this study did show that about one in three individuals may achieve full recovery, and this was based on standardized assessment such as the Global Assessment of Functioning. Other studies suggest remission can be achieved in about 20 to 60% of patients, but I'm not sure, does that kind of add up to what you see in clinical practice?

Craig Chepke, MD, DFAPA: That seems overly optimistic to me. That's, as my wife says, my “blue sky day” of what a perfect day would look like. And if I could get that percentage or see that percentage of people with schizophrenia in full recovery, because I too, I would define it as functional recovery. It's not about symptom reduction, it's about wellness and having a meaningful life and having fulfillment. Those are the type of things we think about with pretty much every other illness in psychiatry. For some reason, in schizophrenia, I think many healthcare providers, we don't even put that as our north star because it seems unattainable. And so, a number that I see often for recovery is about 14% or so. And that seems closer to what I see in the community in practice, which is far, far too low, unfortunately.

Desiree Matthews, PHMNP-BC: Yeah, I would absolutely agree. And when we think about those individuals that may have a poorer prognosis, what can be really difficult to treat is the negative symptoms and cognitive impairments associated with schizophrenia. We don't really, at this point, really have any evidence base that there's kind of a magic bullet, so to speak, to treat these symptoms. And we know that these negative symptoms, the worse they are, they've been worse with worsening functional outcomes, occupational functioning, academic performance, just social functioning, getting along with people, getting along with family, and really can interfere with the quality of life for these individuals.

Craig Chepke, MD, DFAPA:  So, what can we do to optimize the odds that people are going to get to recovery in schizophrenia? What about early intervention? Do you think that helps?

Desiree Matthews, PHMNP-BC: Oh, absolutely. We know that how well an individual and their care team manages schizophrenia in the first three to five years of the illness really dictates how well the individual is going to live with schizophrenia for their entire life. We know that in the first several years, we can see a rapid decline in just their functioning, and we actually see white and gray matter loss of the brain after each relapse. So, one of the biggest things, when I have my patients sitting down in their home with their families, we talk about relapse prevention. We know from a Canadian study that was published in 2019 that it takes just one relapse for an individual to see worsening response to antipsychotic treatments. So, they take longer to respond after a relapse with that same antipsychotic that they previously responded quite well to. So, this has concerns and implications in developing treatment-resistant schizophrenia even to things like clozapine, and we really can't get back that brain tissue at this point. And we know that more relapses, the worse we have in terms of functional outcome, we see increases in mortality with more relapses. So, it's really important, whatever we can do to help our individuals living with schizophrenia is to reduce their risk of relapse and delay the time that it occurs.

Craig Chepke, MD, DFAPA: Yeah, you bring up such a great point. And that study that you mentioned, I'm so glad that you highlighted that each relapse reduces the odds that they will respond to all antipsychotics. And then, that includes clozapine, because clozapine is obviously very underutilized in psychiatric practice. But I think a lot of healthcare providers think, oh, well, that's my ace of the sleeve. If they—things get really bad, we try everything there is, they can always go to clozapine. But they can't always go to clozapine because clozapine doesn't work for everyone with treatment-resistant schizophrenia. Only about half of individuals with TRS actually will respond, and it's more likely that they will not respond the more relapses they've had in general. So, early intervention is really crucial, and that's what I love about working in private practice now. I did many years of inpatient where I worked with people with very—and I still work with some people with longstanding, chronic, decades-long schizophrenia. But the opportunity to have early intervention and to change the course of the whole illness early on is incredibly important to me. And one that I know you're passionate about as well.

Desiree Matthews, PHMNP-BC: Yeah, absolutely.

Craig Chepke, MD, DFAPA: So, you mentioned worsening mortality, and I think that goes along with various co-occurring conditions. Rather than focusing today on the physical comorbidities, I want to talk a little bit more about mental health co-occurring disorders in schizophrenia. What are the most common co-occurring conditions that you see?

Desiree Matthews, PHMNP-BC: Yeah, so we see substance abuse, so alcohol, cannabis, nicotine use disorder. Unfortunately, we also see a lot of posttraumatic stress disorder. Some of the individuals, especially in community mental health that have lived with schizophrenia for quite some time, unfortunately, they've had episodes where maybe they've been homeless or unhoused and they've actually been assaulted out on the street. Think about the traumas from repeated ER visits, hospitalizations, people that have forced medication on them in these emergency situations. This can be really traumatic for these individuals. Not to mention, of course, our mood disorders like anxiety and depression can be really commonly occurring. Not to mention, elevated suicide, risks of suicidality, especially early in the disease course is something that we're very careful to screen and educate our families on.

Craig Chepke, MD, DFAPA: Yeah, I love the breadth of the different co-occurring conditions that you bring up. Because I think probably when I asked the question, everyone that's listening today thought substance abuse was the first thing. And true, that is very common. But thinking about those other less prominent ones that we don't think about, doesn't make them less important or less prevalent, but just less prominent. Like PTSD, that's a fantastic one. We know that people with schizophrenia are far, far more likely to be victims of violence than to be perpetrators, despite the stigma to the opposite. And that's a very real concern. And then, the less obvious traumas of just being hospitalized. I definitely think hospitalization is traumatic more than therapeutic for most people, unfortunately, with the way that the system is set up these days. But even just the forced medications that you mentioned. That's a really important one that I think we need to take into account because that can really skew an individual's perception of medications in general and specific treatments going forward into the future.

Desiree Matthews, PHMNP-BC: Not to mention, incarceration, being in jail. Oftentimes, you know, our system definitely has cracks in it, and many of these individuals are incarcerated, maybe being treated in a holding situation in jail. So, we also have to kind of think about that trauma and really the fragmented treatment that people are getting.

Craig Chepke, MD, DFAPA: Yeah, no, another great point is that—not just being victims of violence, but could be while incarcerated. And people with schizophrenia often are not, as I said, committing violent crimes to get arrested, incarcerated. It's often just kind of petty crimes of trespassing or small little things like that, or small petty thefts that can add up to a big rap sheet over time and get them incarcerated. Really interesting and dismaying and kind of shocking statistic that our mutual colleague, Dr. Jonathan Meyer tells about a lot is that the largest psychiatric hospital in the world is actually the LA County Jail. That they have, I believe it's somewhere around 35,000 inmates, and about 45 to 50% of them have serious mental illness. And so, you would never think that that's the largest psychiatric hospital in the world, but it is because that's how individuals with SMI can concentrate into our penal system. And it's just very sad. You know, antipsychotics helped us to deinstitutionalize patients, but many of them just went to a different institution and went to be incarcerated sadly.

Desiree Matthews, PHMNP-BC: When we think about substance use, I don't know, Craig, in your experience or kind of what data you see out there in the literature, but upwards of 60% of individuals living with schizophrenia could have a diagnosis of any given time of a substance use disorder. And we have, I think, different factors that play into this. We may have a genetic kind of overlap in terms of the susceptibility with schizophrenia and other conditions like mood disorders and substance use disorders. But sometimes people also self-medicate, right? Maybe they're antipsychotic or their treatment is not working very well for them and they're using it to cope. Whether that's be to sleep, just try to feel better. Oftentimes, my patients may report feeling numb, sad, not feeling any pleasure, and they use substances to try to get back some of that. So, it can be really difficult sometimes to kind of know what's up and down if individuals are using substances. What's really worsening their schizophrenia symptoms? Are they med adherent or not? So, substance use can really complicate not only diagnosis, but as well as their treatment and their ability to adhere to treatment consistently.

Craig Chepke, MD, DFAPA: Right, and I totally agree. I think we need to really probe into what is the rationale behind their use. I think many people have a visceral reaction when they hear about substance use that it is very pejorative in nature. And as you said, it may simply be just to feel more normal, to feel like they did before the diagnosis. And we need to be empathetic with that and really figure out why are their needs not being met? Are there treatment factors that we can alter? There's some things we may not be able to alter, but sometimes we can, and we need to do our best to elicit those and intervene when we can. So, let's just talk about the average impact on daily life that schizophrenia can have. How does the illness impact an individual's daily routines and self-care?

Desiree Matthews, PHMNP-BC: Wow, I think in every way, Craig. I mean, we have issues with them academically being able to be successful in college. Thinking about their personal life, social relationships, just being adherent to medication. We know that about 80% of individuals with schizophrenia have some type of cognitive impairment in addition to struggling with some positive and negative symptoms. And we know this cognitive impairment can make it hard for people to take medication every day, follow a treatment plan. Even if they want to, and want to stay adherent to their treatment plan, this cognitive impairment can make it very difficult. Just even be able to log on for the visit. Think about navigating a bus schedule or being on time, navigating directions, getting along with other people. So, there's a component of social cognition. So, this can really impact every facet of life if it's not well controlled. And we also know, we’ve talked about the negative symptoms, right? The avolition, alogia, amotivation—his also has been linked to worsening outcomes in terms of functional impairment in the workplace, at home, just having relationships with loved ones.

Craig Chepke, MD, DFAPA: Having worked in the same community with you for many years, that is one of the things that I really love about you, is the great empathy that you have for individuals with SMI. And that is really shining through today, bringing us and our audience these other explanations for certain aspects that may be frustrating to healthcare providers treating individuals with schizophrenia. That, many times, they do want to adhere to treatment, but the cognitive dysfunction makes it difficult for them to do so. And really walking a mile in their shoes without judging. And I think that's a really important facet for us to have as healthcare providers, as we're helping people to walk through this illness, is really trying to think about what the perspective is like for them and those that are their loved ones and care partners. And so, hopefully that is really coming across our audience as well. So, unfortunately, we're out of time for today's episode, but I really appreciate you being here. And thanks to our listeners today. Thanks for joining us for the Great Exchanges in Schizophrenia podcast.

Desiree Matthews, PHMNP-BC: Thank you so much.