NP Notes: Consequences of Schizophrenia Relapse (SCZ Episode 3)

Craig Chepke, MD, DFAPA: Hello, and welcome back to the Great Exchanges in Schizophrenia podcast. I'm your host, Craig Chepke. I'm the Medical Director of Excel Psychiatric Associates in Huntersville, North Carolina, and the Scientific Director of Psych Congress. I want to welcome my friend and colleague, Brooke Kempf. Tell us about yourself, Brooke.

Brooke Kempf, MSN, PMHNP-BC: Hi there. My name is Brooke Kempf. I'm a psychiatric mental health nurse practitioner out of Terre Haute, Indiana. I'm an adjunct faculty member for Indiana University of Indianapolis, and I have a long history of working in our local community mental health center, and I'm also on the steering committee for Psych Congress. I'm very happy to be here to talk with you, Dr Chepke.

Craig Chepke, MD, DFAPA: Well, I'm thrilled to have you here. So, today, let's drill down into the concept and the consequences of relapse in schizophrenia. So, how would you define a relapse in schizophrenia, Brooke?

Brooke Kempf, MSN, PMHNP-BC: So, when I think about relapse when it comes to schizophrenia, it's basically a reoccurrence or a worsening of symptoms of somebody that was previously stable. I think one of the things that we can easily associate with in our world—I often, unfortunately, think of this, of an individual with history of addictions and they've had a relapse of their addiction. So, they were doing very well, and then they had this bump on the road and they're back, kind of backslid into where they were. We have our patients with schizophrenia, they've been diagnosed, received treatment, doing well, and unfortunately for one reason or another they have a bump in the road and then start declining, maybe functional decline, maybe increase in symptoms, positive symptoms or negative symptoms.

Craig Chepke, MD, DFAPA: So, you bring up a great point is that relapse doesn't necessarily have just one definition. I think we generally think about a relapse in terms of positive symptoms, but tell us about what that could look like if there's a relapse of negative symptoms.

Brooke Kempf, MSN, PMHNP-BC: Yeah, because it can look different in any individual. So, particularly if you think about the negative symptoms, you might have somebody who was—their symptoms were relatively stable. They were socializing, they had improved communication with others, they're attending appointments, they're getting out, they're doing things. But then, all of a sudden, you see this decline. They're not showing up for appointments, they're not getting up doing activities. Whenever they come to talk with you, you're almost concerned about their mood because they seem a little bit more withdrawn. When they're communicating, their full sentences and full stories have now been reduced down to one-word answers. Just, you see a definite overall difference also maybe in appearance. So, they, all of a sudden, are coming to appointments not showered, their clothes are dirty, they seem unraveled in appearance compared to what their previous baseline was.

Craig Chepke, MD, DFAPA: Yeah, it's really important to really attend to those—I hesitate to call them small details because they're critically important in this aspect of, how are they dressed, how are they groomed? Is there a subtle change in their eye contact? Have they not shaved and they usually are well shaved for the appointments, things that we may not attend to as closely, in mood disorders, I think, can be very important harbingers of potential relapse or impending relapse in schizophrenia.

Brooke Kempf, MSN, PMHNP-BC: Absolutely, think about that impact it has on their ability and how they function in our society and how we already have a stigma against mental health and schizophrenia. Think whenever those negative symptoms are impacting them and maybe they don't look as good or smell as good as somebody. All of a sudden, now that influence has negatively impacted their day-to-day functioning in a negative way that unfortunately is just a symptom of their illness, not a personal decision.

Craig Chepke, MD, DFAPA: Yeah, and I think most clinicians recognize the positive symptoms of schizophrenia and a little bit less good in general as a field at recognizing the negative symptoms or cognitive dysfunction. But you added a fourth dimension that I'm really excited to talk about, which is mood. So, when teaching about schizophrenia, nobody uses the PANSS, the Positive and Negative Syndrome Scale, in clinical practice. It takes roughly an hour to administer a PANSS. So, it's useful for research, but not for clinical practice. But I think it's useful to point out that in the PANSS, which is the gold standard rating scale these days for schizophrenia studies, there are seven items dealing with positive symptoms, seven items dealing with negative symptoms, and 16 relating to general psychopathology, which includes a number of items related to mood, anxiety, sleep, and so on and so forth. And this is a very broad spectrum illness. Now, in most ways, the DSM has been a splitter, not a lumper—that everything is a very focused diagnosis, which leads to a lot of comorbidities we say, but it's really all part and parcel of one illness. Whereas with schizophrenia, it really does encompass all of those things, including mood and anxiety, and we don't often think about those. So, talk to me more about those, Brooke.

Brooke Kempf, MSN, PMHNP-BC: We definitely have to incorporate that into our assessment and talking with individuals and trying to assess things that particularly have to do with mood. You have to get a baseline knowledge of patients. I often ask them things like, “If there are things that you absolutely love to do, what would those be? Playing basketball? What are your favorite movies? Who's your favorite person to hang out with?” Those things. And then, when I see them back in recurrent sessions, “So, tell me, what have you been doing lately? Who have you been hanging out with? What's your day look like? What's a 24 hour period look like?” And if they can't tell me, “Oh, I haven't talked—when was the last time I talked to so-and-so? I don't remember, I haven't played basketball in quite a while.” I start thinking about, okay, I'm starting to see negative mood here. “What's your sleep like? How's that impacting your mood? Are you not doing these things because you're anxious and don't want to be around others?” We have to identify these symptoms because, again, it's going to lead to further consequences, negative consequences down the road that can only worsen over time if we don't address them.

Craig Chepke, MD, DFAPA: Absolutely, and just important to point out to our listeners, this is not just a topic for people who have a diagnosis of schizoaffective disorder, that every person with schizophrenia, we should be thinking about mood and anxiety. And then, of course, schizoaffective disorder is a separate diagnosis, but with your garden-variety schizophrenia diagnosis, these are important to assess.

Brooke Kempf, MSN, PMHNP-BC: Absolutely.

Craig Chepke, MD, DFAPA: So, you mentioned consequences of the relapse. Talk to me about what you often see as consequences of relapses in schizophrenia.

Brooke Kempf, MSN, PMHNP-BC: First and foremost, I think about the physical consequences. Unfortunately, if we allow a patient to relapse or unfortunately they do relapse, we can see permanent brain damage occur with each relapse. And the longer we allow patients to remain ill, the more damage that could be done. But then, when I think about the functional impact that these relapses can have on an individual's life, maybe we got them to a stable point where they were able to start working and then, unfortunately, relapse occurs and impacts their job performance. And so, now they've lost their job. Maybe they have psychotic symptoms that greatly impact a relationship, so they make threatening statements towards a mom or a loved one or a girlfriend. So, now they've lost their personal relationships. And then, I kind of already mentioned about how that can just impact further stigma. So, maybe they live in a large apartment complex, and they were doing very well. And they may have been doing so well nobody even knew that they had a diagnosis. Well, they hear loud noises coming from the apartment, or they see the individual acting bizarre. They get accused of using substances, something like that. An apartment manager threatens to kick them out of their apartment if they continue to behave that way. It can just be a vicious downward cycle of unfortunate events.

Craig Chepke, MD, DFAPA: Yeah, and you bring up so many great points. And, in terms of the stigma, people with schizophrenia are unfairly stigmatized as being the perpetrators of violence. And we know that is the exact opposite of the reality. The statistics show that people with schizophrenia are far, far, far more likely to be the victims of violence than they are to be perpetrators. But I've got one young man who is 29 years old now. I started seeing him many years ago, but he's a larger individual. He's over six feet tall, weighs around a little over 300 pounds, and when he starts to destabilize, he gets really irritable. And that can be very physically imposing to others. And I know him very well. I know he's just a big teddy bear. That even when he has relapsed, he's never actually hurt anyone. But that stigma could cause people to be physically afraid and he could be—that can lead to being kicked out of an apartment complex, losing a job that maybe they got through voc rehab. Just, various things that could be huge setbacks that for someone without schizophrenia, that has a pretty well-defined upward trajectory of their career, with schizophrenia, what to others might be a small setback, could be devastating and could put them back years and years. And so, it's really important to think about those ripple effects of a relapse. It's not just, yeah, they're in the hospital for five to 10 days, very short these days, as you know, unbelievably short in my opinion. But that's a different topic. But it's the further consequences that happen outside of that that I think we really need to call attention to in the larger story of the lifetime of someone with schizophrenia.

Brooke Kempf, MSN, PMHNP-BC: And just being hospitalized can be traumatic for a patient with schizophrenia. I often make the reference that when you go into the hospital because you have pneumonia or a heart attack, you have balloons, flowers, loved ones surrounding your bed, “Oh, we feel so bad.” You don't get that when you are admitted for schizophrenia. There's no visitors, there's no flowers. I mean, it can be a lonely and very scary traumatic event for individuals.

Craig Chepke, MD, DFAPA: Yeah, it certainly can. And so, we are kind of circling around, we need to prevent these relapses. So, what are some of the causes that you see often as being triggers for relapse?

Brooke Kempf, MSN, PMHNP-BC: I think obviously the number one cause is nonadherence to medication. That just obviously we get benefit out of medication, and if a patient is not taking it and not just taking it consistently, but just small misses of medication can lead to relapse. So, medication is a huge issue. Substance abuse, we've talked about before, when the impact it can have on relapse, just day-to-day stressors also can have a severe impact on patients with schizophrenia who maybe don't have good coping mechanisms and already have difficulty being able to tolerate stress. So, all of those can impact patients to the point of relapse of symptoms.

Craig Chepke, MD, DFAPA: Yeah, and I'm so glad you brought up that it's not just nonadherence, it’s partial adherence that can be the devil for patients. That I've actually taken to kind of eliminating the term nonadherence when I teach about schizophrenia, because every healthcare provider will admit, “Oh yeah, nonadherence is a terrible problem in schizophrenia for other people's patients. My patients take their meds,” is I think everyone's perspective. And that's not true, not just of schizophrenia, that's not true of any chronic illness. You look at rates of adherence in type two diabetes, hypertension, HIV, name it. I mean, any chronic illness has poor adherence. And it's not just binary of they're either fully adherent or fully nonadherent. It’s that spectrum, the gradient of the shades of gray in between where humans live, not just humans with schizophrenia. And I think that is a little bit more palatable to healthcare providers that well, because I’ll come back—

Craig Chepke, MD, DFAPA: Do you think your patients take 100% of their medications, oral medications, every single month exactly as prescribed? Well, no, probably not a hundred percent. Okay. So then, you recognize that there's partial adherence. Do you think that's a problem? Kind of lead people through. And then, there are voluminous statistics that show that even just partial adherence, missing just one dose out of 10, can lead to a statistically significant increase in relapses. One dose out of 10, obviously that means one pill a week missed is if it's once-daily medication, one pill a week could lead to a substantial increase in relapse. It's easy to miss one pill a week.

Brooke Kempf, MSN, PMHNP-BC: I’ve learned long ago to ask patients too, not, “Have you been taking your medicine?” But, “How often are you missing your medication?” Just to kind of normalize it.

Craig Chepke, MD, DFAPA: Right. And this is, I think, maybe the most important message that I think the two of us could relate to our audience out there is preventing relapse starts with us. That we need to not assume that patients are taking all of their oral medications exactly perfectly. We need to normalize it and not—because we come and say, “Are you taking your medications how I prescribe them?” “Yes, yes, I have.” They're all going to say, “Of course, absolutely, 100%. You got it, doc. You know it.”

Brooke Kempf, MSN, PMHNP-BC: They don't want to disappoint you.

Craig Chepke, MD, DFAPA: Right, exactly. And so, we need to adjust how we are approaching the situation and not put all the onus and burden and blame upon our patients. We need to accept our share of the blame as providers that there are aspects that we can improve in our practice to help to be able to assess adherence better, but promote better adherence to0 and promote that relationship. Because if we're coming with a very top-down power versus subject type of relationship, they're not going to open up to us and tell us about their symptoms, their adherence, et cetera. So, what kind of strategies do you use to try to prevent relapse with your patients?

Brooke Kempf, MSN, PMHNP-BC: Yeah, so obviously we mentioned medication adherence is such a primary issue. So, I try to educate my patient on their treatment, why it's important, educate them on the diagnosis, how the medication's going to help, work with them on choosing a medication so that they're more likely to take a medication that they felt involved in the decision making on that choice, being sure that they're aware of what options are out there. Primarily, you and I have always been strong advocates of long-acting injectables. So, if I know that adherence might be an issue, which we know that it's going to be, I'm going to let them know, you know what? You may not have to take a medication every single day. If you do really well on this form of medication, it comes in longer dosing intervals, so that you don't have to take a pill every day. I really think that we need to focus and let patients know that that is an option, but then also giving them other strategies, being sure that they're linked to multiple different resources, therapies to reduce stress. Talking with them about a plan when they're well, I think is very helpful. You can't come at them when they're actively psychotic and not trusting you and hearing voices that are telling them negative things about their medication. You need to really discuss that plan when they're well so that you're able to set a plan. And then, when they are not doing well, remember we talked about this could happen, it could be related to this, how can we get you back on your feet again? Those types of things. Or I think medication adherence obviously, and finding ways to help patients take their medicine on a day-to-day basis. If they're refusing long-acting injectables or it's not appropriate for them, then finding ways to help them remember to take medicine, setting alarms for medications, setting them up with pharmacies, maybe that we'll do pill packs for them, anything to assist them. And be honest with them—I have difficulty remembering to take my medication, so I have to set reminders. I have to use a pill reminder. Again, normalizing it and just working as a team with that shared decision making.

Craig Chepke, MD, DFAPA: That was a masterclass, Brooke, because adherence is important, but it's not the only thing because medications are not the only thing. Having a comprehensive plan that includes us supporting them, that includes marshaling, whatever resources they have in the community, whether it's friends, family, other members of the healthcare team. And having a proactive plan in place that we need to put all those resources in play for our patients living in schizophrenia to prevent relapse. Because the bottom line is relapse is preventable if we all do our part and work together. So, I want to thank you for joining us today, Brooke. This has been a wonderful discussion, and thank you to our listeners.

Brooke Kempf, MSN, PMHNP-BC: Thank you so much.