Rahn Bailey, MD, DFAPA, and Henry Nasrallah, MD, explain how to increase patient adherence to treatment and address the stigma associated with schizophrenia even in the family of the patient.
Peter Salgo, MD: How do we go about pragmatically increasing adherence to the treatment regimen? What do you do? What are some tricks that you guys have?
Rahn Bailey, MD, DFAPA: A few things. First and foremost, this discussion about having the family and the patient understand repetitive messaging, I think is a start. We have to recognize we’re battling not only the illness, but also the stigma that our society continues to allow to be perpetuated that worsens the concern. Very often, families as well as the patient might think, “OK, the patient has been doing well for a while, let’s stop taking the medication.” But they deep down don’t want to have a relative who has schizophrenia or any kind of primary brain disorder. In communities that I’ve worked in throughout my career, all too often unfortunately, a person might think that if you’re right with God, then you’ll be OK and you don’t really need the medication. They get that piece confused. I think it’s our job to acknowledge appropriate messaging and the repetitive messaging so that is unlikely to be the case.
I think the other thing you have to increasingly do is to make it OK for them when there’s some kind of an initial difficulty to work through it. Maybe not just a patient, but a family member or a colleague or a friend, can make sure they are on the medication. Maybe we try to use once-a-day medication if we’re using oral therapy versus multiple days of treatment. We got onto an idea of drug holidays or weekend holidays, all kind of things I went through in my career, all of which have been counterproductive in appreciating the severity of schizophrenia, the onset and the significant progression that it entails. That’s why I think we have to have a full-court press in trying to address it, as well as what kinds of medicines we use, and then perhaps we could move toward the situation regarding long-acting choices as well.
Henry Nasrallah, MD: Rahn, I want to build on what you just said. The stigma works on 2 ends of the schizophrenia course of illness. Early on, when the kid is beginning to show psychotic symptoms at home, the stigma prevents the family from bringing them to the hospital. Until they kill the cat, burn the house, or run naked down the street— then they bring them. This has been shown in many studies to extend up to 2 years; patients can remain for several months or up to 2 years wallowing with their symptoms before they are brought to care. Why is this important? Because this is what we call DUP, duration of untreated psychosis. It is very bad for the brain of the patient. Many studies have shown the longer the DUP, the worse the outcome and the worse the prognosis. That’s No. 1, which is at the beginning, just bringing them in for that first episode.
The second problem, on the other end, is that families are in denial. They do not want to believe that their loved one, son or daughter, has a potentially disabling illness. They see them getting better in the hospital, and they say, “That’s OK, they’re fine, it was just a little stress,” and so on. We need to educate them very aggressively that this is coming back. It’s like cancer. It’s not going to go away. Just because they look good doesn’t mean that they can stop the medication. That’s the first step in adherence, ensuring that the family monitors the patient, because they’re still connected with the patient at the first episode. Later on, forget it, there’s no family later, patients and their family are disconnected once they have multiple episodes. But at the first episode, the family can really help ensure adherence and make sure the patient is taking the pill every single day. I prefer to start with long-acting injectables right off the bat for a variety of reasons I’ll talk about later. But if you want to start with pills, we should tell the family this is like diabetes, if you stop your insulin, even 1 or 2 days, the hyperglycemia is going to come back. You must take the pill every single day.
Peter Salgo, MD: I would take issue with you about one analogy. You can cure cancer, you can make it go away, but schizophrenia, maybe not.
There’s a well-known study, it was a study that I heard about when I was a medical student, in which they gave medical students placebos, and they knew they were placebos. We simply said we want you to take 1 a day for the next year, that’s all. It’s not going to harm you, not going to benefit you, but we just want you to count the pills and take them. At the end of the year, I think the average motivated medical student—we tend to think these people are smart, but that’s open to debate—but they had about a third of the pills left over. It goes to what you were saying. It’s very difficult to adhere to a rigid regimen if it has to be a once-a-day or several-times-a-day dose, isn’t it?
Rahn Bailey, MD, DFAPA: I’d agree.
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Transcript Edited for Clarity