Unpacking the Patient Experience of Living With Tardive Dyskinesia

As an April 2023 article published in The Journal of Clinical Psychiatry concluded, “Tardive dyskinesia imposes a substantial burden on patients’ physical, psychological, social, and professional lives and impacts management of their underlying condition.”

Psych Congress Network sat down with Kevin Williams, MS, MPAS, PA-C, Psych Congress steering committee member, at the 2024 NP Institute to discuss the often-overlooked social and professional dimensions of life with tardive dyskinesia (TD). In Part 1 of this series, Nurse Williams highlights key findings from the 2023 TD patient survey, discusses comorbidity challenges, and addresses challenges that patients with TD may face in the workplace and beyond.

For more clinical insights on TD care, visit our Tardive Dyskinesia Excellence Forum.

Read the Transcript

Kevin Williams, MS, MPAS, PA-C: My name is Kevin Williams, and I am the lead clinician and CEO for On Point Behavior Health in Tampa, Florida.

Psych Congress Network: Recently, the Journal of Clinical Psychiatry published findings from a survey assessing patient burden of tardive dyskinesia. What are some of the most impactful insights from this study?

Nurse Williams: So the study showed that 3 out of 4 patients with tardive dyskinesia  reported feeling self-conscious, and even some feeling embarrassed. But it also showed that patients had worsening social withdrawal and mental/physical dysfunction along with their quality of life being reduced. When we see how the impact goes well beyond just a physical condition, we really begin to understand that we should be provoked as clinicians to really make a change in our assessment and screening for this.

Listen, one of the salient points from the study showed that 33% of caregivers observed severe impact to their loved ones. It's a large number of observation from caregivers on those patients. So, if not only the caregivers are noticing them, what we as clinicians should be doing is really assessing our patients and screening them appropriately to ensure that we're jumping in as early as possible to treat TD.

Psych Congress Network: Patients with underlying schizophrenia reported the highest burden of TD across all domains. What implications does this have for clinicians treating patients with schizophrenia and comorbid TD?

Nurse Williams: So often as clinicians, we're focused on treating the condition. I know talking with several of my colleagues even when dealing with patients who have schizophrenia, we get so focused on treating the positive and negative symptoms that we commonly see with schizophrenia. Well, through the study we're really able to see that we now have another layer that really has to be unpacked: our understanding of it as clinicians and then our approach with how we're treating patients who also have TD.

My recommendations in doing this is really starting early with the conversations with our patients who have schizophrenia and when possible bringing in caregivers so that we're really using a team approach to begin to discuss. We now have appropriate treatment to be able to effectively treat our patients, so they no longer need to be socially withdrawn or facing any of the physical or psychological dysfunctions that we commonly have been seeing with the studies that we've conducted.

My approach to really the implications in treating schizophrenia with comorbid TD is that it's just another layer that we have to begin to discuss and accounting for in our treatment plans when it comes to treating both schizophrenia and tardive dyskinesia.

Psych Congress Network: What impacts does TD have on work productivity and activity impairment among TD patients? How should clinicians adjust treatment approaches with these in mind?

Nurse Williams: We come to understand through the research performed by Dr Jain et al. that the impact of TD goes well beyond just the physical, social, and psychological factors that we were assessing. I find that our community really needs to take these facts and begin to assess the impairments that our patients could possibly be experiencing in their work environment and in other environments as well, and then taking these facts and really beginning to utilize the tools that we have. We have the impact TD scale, or really just simply taking that and asking the questions, really infusing it into our visits so that we obtain the information, are quickly able to score those items and draw out how our patients are being impacted.

Another approach that I really think that we should take in adjusting our treatment options is just asking the patients. I've learned that simply asking them, have they noticed these changes or their caregivers about these changes, that it opens up a dialogue that we get so used to our routine visits and what we are going to assess, that just adding that question into it really can begin to open up proper dialogue that we will then gain new insight and then be able to appropriately address through treatment plans.

Thank you so much for tuning in today and learning how this study really can impact us as clinicians, along with the impact that TD has on our patients.Listen, please return back at any time and come back and check out and see what we have available to you in regards to content and more information for not only TD but other conditions as well. Thanks so much.

Kevin N. Williams MS, MPAS, PA-C is the CEO and Lead Clinician at OnPoint Behavioral Health. He is a Physician Associate that specializes in Psychiatry as well as 2 master degrees in Interdisciplinary Medical Sciences and Physician Assistant Studies from the University of South Florida and South University respectively. He has gained experience treating children, adolescents, and adults for the past 9 years in the areas of inpatient, outpatient, and long-term care.