Supporting Patient-Centered Decisions in Tardive Dyskinesia Care

Martha Sajatovic, MD: Hello. I'm Dr Martha Sajatovic. I direct the Neurological and Behavioral Outcomes Center at University Hospitals Cleveland. Joining me here today is Dr Camilla Kilbane, who directs the Parkinson's Disease and Movement Disorder Center, also at University Hospitals Cleveland.

Thanks for joining me, Camilla.

Camilla Kilbane, MD: Thank you for inviting me. I'm looking forward to this conversation.

Sajatovic: Camilla, let's start off with the way we communicate with our patients. What do you think are the most important areas or topics that we have to address with our patients and their families about the issue of tardive dyskinesia (TD)?

Kilbane: I think there are many things that are important to discuss when we're talking about TD. One of them is the movement: “How is it affecting you physically? Are you having difficulty with chewing, eating? Are you having difficulty performing any tasks?”

Or, “How does TD affect you psychologically? Does it make you embarrassed? Does it make you not want to go out in public?”

These are all open-ended questions that can then start a dialogue between the physician or the provider and the patient and their families.

Sajatovic: As a psychiatrist, I am more likely to see people who are exhibiting movements consistent with TD that the patient isn't aware of. Or maybe they're aware of them, but they're not sure what it is. They'll have been prescribed an antipsychotic medication for a variety of different reasons. So, I will talk about the specific role of antipsychotic drugs in being a risk factor for TD. Sometimes it's a dialogue with the patient, sometimes with a family member to consider, “What is this?”

But what we really look at is “How is this affecting your life? Is it something that is a burden for you?” And, “Could we look at whether there are treatment options that might help you?”

Kilbane: When patients come to the neurologist, there is a self-selection bias, I think, and most of my patients are probably much more motivated and have done more research about the diagnosis as opposed to those who come to the psychiatrist, who either refers the patient to me or initially approaches the diagnosis. I think it's a very different conversation that you are having with your patients, compared with me.

Martha, can you tell me how your care plan might differ depending on the patient and the clinical diagnosis that caused them to need psychotropic medication?

Sajatovic: Their psychiatric diagnosis definitely is going to be a driver. We know that people with some types of serious mental illness — for example, schizophrenia or bipolar disorder — may process information differently. It may have to be delivered in a slower way or involving others or may need a series of visits.

I do think it is really critical to make sure that the patient has a choice and a voice. Regardless of their diagnosis, this could be an opportunity to bring family members in. They may notice impairments or symptoms that are relatively subtle — both psychiatric and TD symptoms — that the patient doesn't volunteer and that I may not see in a 30-minute or 45-minute office visit. Sometimes patients or family members will suggest that they maybe should just stop the drug, and I think that's an important point of communication between the psychiatrist and the patient.

I will talk about the likelihood that you will have a psychiatric relapse if we stop the drug or if you stop the drug on your own. Many patients and families will have already experienced having at least one psychiatric relapse episode, and that is usually not something that anybody wants to go through. It's painful; it's difficult to recover.

That is a foundational discussion to have before we go into “What are my treatment options for TD?”

Kilbane: I think sometimes people just want information, right? They want to be informed about their condition and feel empowered that they're making the choice themselves, and that can sometimes be a step in the right direction. Then it really becomes a discussion about, “How is it impacting you?” And then we start talking about the medication treatments if they're interested in pursuing those.

How do you build that therapeutic trust and alliance with your patients with regards to treating their psychiatric disorder and possibly TD?

Sajatovic: That's an excellent question. I would say that's important for any kind of clinician. For mental health clinicians, that it's particularly important because mental health conditions very often are highly stigmatized. I won't dictate most of the time what you need unless it's an acute, immediate safety issue.

People need to feel comfortable with expressing their emotions and what they want to do or not want to do. Just because I think something is a problem or not a problem may not be where they are.

I can think of a patient that I had who worked as a hairdresser and clearly had movements of her hands. You know, a little bit of bilateral writhing. When I talked with her about treatment, she told me that she was absolutely not interested in treatment because she was already on eight other drugs. She came to a session a couple years later and said that she noticed that she was putting her hands in her pockets so that her clients wouldn't see her hands moving. So, she had a behavior or a metric that was bothersome to her, and that's what she wanted to see go away.

Kilbane: That’s a really great example. Sometimes people just have to think about it for a while and let it marinate in their head, and then they might be ready at some point. And, of course, when you’ve already had a side effect to a medication, you may be more cautious to try another medication.

I think this idea of “bringing it back gently” and discussing it is a really great idea. And I think that's a lot of what I do too. My job is to inform patients, give them the information about what I think is going on with them, and then we have the discussion about should there be treatment or not.

Sajatovic: I wonder how you communicate with the individual who comes to you saying, “I think I have TD, should I get treatment?”

Kilbane: For me, it's really important to first of all make sure I know what the clinical diagnosis is. Then, I think it's important to get into what impact the tardive movements have on the individual.

What I may perceive as mild TD can have a major impact in somebody's life, whether it’s vocational, psychological, or physical. If you're a dentist and you have a tiny little tremor, you may lose your practice because nobody's going to come to your practice anymore. I think the same thing goes for TD. Learning more about the person you're seeing is going to help you decide if you think the treatment is going to be good.

But I think the important part is, if it bothers the patient — even though you think it's mild — you ought to treat it because it's impacting their quality of life. And I think that's a really important part of this more patient-centered and shared decision-making. And we can agree to disagree too — they're consenting adults who come in for discussions, and we go through all of the possible pros and cons.

One of the other things I tell patients is that if you decide to try this medication — a VMAT2 inhibitor for this movement — it doesn't mean you have to stay on it for life. So just giving patients the feeling that it's their choice and they can also change their mind, sometimes that also helps in that discussion about should we do it or should we not.

Sajatovic: Right, and I would say that the flip argument is very often once they try it, the TD goes away and they feel a lot better.

Kilbane: Exactly.

Sajatovic: And then, looking back, they’re thinking, “I was a lot more worried about it than I needed to be.”

Kilbane: Exactly.

Sajatovic: But we have to go through that discussion and that shared decision-making. We want to give them the tools and the confidence to make a decision that's right for them every day.

Thank you, Camilla. That was really a wonderful conversation.

Kilbane: It was my pleasure.

Note: This article originally appeared on Medscape.