A colleague recently alerted me to the fact that this is Tardive Dyskinesia (TD) Awareness Week [May 6 to 11, 2024] and it made me reflect on the fact that this particular psychiatric issue remains a significant challenge in our field. In prior roles, whether regularly screening patients treated with antipsychotic medications for risk of developing TD or overseeing organization-wide patient care issues, the impacts of TD include social, physical, vocational, and psychological functioning as well as the impact of TD on the underlying psychiatric disorder. Since May is also Mental Health Awareness Month I am taking this opportunity to highlight and raise awareness on this specific clinical issue that requires a more systematic approach to improve quality of care for so many individuals impacted.
The Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-V) [1], defines tardive dyskinesia as “involuntary athetoid or choreiform movements lasting at least a few weeks, developing in association with the use of a neuroleptic medication for at least a few months, and persisting beyond 4-8 weeks.”
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Tardive dyskinesia is a chronic and often irreversible movement disorder caused by prolonged use of dopamine receptor blocking agents, typical and atypical antipsychotic medications, commonly prescribed for psychiatric conditions such as schizophrenia, bipolar disorder, and other mental health conditions. It's characterized by abnormal involuntary, repetitive movements, typically of the face, torso, and extremities. While symptoms can range from mild and not easily noticed to disabling and severe (these can include difficulty swallowing, speech impediments, disfiguring facial expressions) many recent surveys show that the majority of patients with TD are aware of their movements and feel self-conscious or embarrassed by them. [2]
Common Features: · Frowning or grimacing · Tongue protrusion · Finger and/or toe movements · Lip smacking · Rocking of the pelvis
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· Puckering and pursing of the lips · Rapid eye blinking · Chewing movements · Rapid movements of the arms, legs, and trunk |
It is estimated that there are approximately 600,000 people in the United States that live with TD, but tragically, a significant percentage go undiagnosed. To make matters worse, in a recent large survey of patients taking medications, 58% of patients were not aware that antipsychotics can cause involuntary movements or TD. This gap in awareness about TD underscores the importance of psychoeducation on this clinical matter.
The lifetime prevalence of TD among patients treated with antipsychotics can range from 15% to 40%, although this is thought to be an underestimate, with higher rates in those 55 years of age or older, postmenopausal women, with a history of substance abuse, or with a mood disorder. [3]
Since TD significantly impacts a patients' physical, cognitive, social, and vocational abilities—leading to poorer quality of life and increased healthcare utilization—as healthcare providers we must do a better job at primary prevention as well as routinely assessing and managing TD in our clinical practice. [4] According to 2019 data from RE-KINECT [5] which showed the significant quality of life impacts on patients with possible TD:
1 in 3 had moderate-to-extreme problems performing their usual activities (work, housework and leisure activities)
Almost ½ of patients with possible TD reported moderate-to-extreme levels of anxiety/depression
1 in 5 patients with possible TD reported moderate-to-extreme mobility problems
Patients with possible TD reported poorer perceived quality of life
Healthcare providers play a critical role in the timely diagnosis, assessment, and management of TD. It is essential to initiate discussions about TD with patients who are at risk or are showing symptoms, considering both the physical manifestations and the broader impacts on their lives. Education on recognizing the signs of TD and on the effective use of assessment tools should be a priority for all healthcare providers dealing with patients on long-term antipsychotic therapy.
Based on current consensus guidelines clinicians should follow a 3-step approach for anyone in their care/practice on an antipsychotic agent:
Diagnosis
Clinicians must examine all patients for any movement disorders before initiating treatment with an antipsychotic (typical or atypical) medication. Diagnosis of TD is based on the presence of dyskinetic movements in a patient with prior or current exposure to a dopamine receptor blocking agent. Importantly, any persistent abnormal movements in one body area is sufficient for a diagnosis of TD after excluding other possible causes such as Huntington’s disease or other drug-induced movement disorders. The onset of TD can be subtle and difficult to distinguish; tardive dyskinesia can manifest as early as 1 to 6 months following the initiation of an antipsychotic. It’s important to keep in mind that regardless of underlying diagnosis, TD is not rare, and anyone exposed to treatment with antipsychotics is at risk.
Assessment
It is imperative to assess the impact of TD on an individual’s life and gather as much information from collateral sources, such as family and caregivers, and other healthcare providers. Routine assessment should involve examining the impact of the disorder on various domains such as social, physical, vocational, and psychological functioning. These assessments must drive the conversations about management and treatment of TD with the patient and family/caregivers.
Common assessment tools include the Abnormal Involuntary Movement Scale (AIMS) and the Dyskinesia Identification System: Condensed User Scale (DISCUS). The American Psychiatric Association has recommended assessment of TD using common assessment instruments for detection and following severity of TD in patients treated with antipsychotics.[6] Updated 2020 APA guidelines stipulate that patients with schizophrenia should be assessed with AIMS every six months if they are high-risk for TD and every 12 months otherwise. [7]
Despite the community-standard of care recommendations and the significant negative impact that TD has on patients, many clinicians face challenges in implementing these tools effectively. Some of the reported reasons for these challenges include the perceived complexity of these tools, time constraints, patient compliance/reluctance, and limited exposure to TD screening education.
Addressing these challenges requires targeted education and training for healthcare providers, better integration of assessment tools into routine care practices, and possibly the development of simplified or more efficient tools that can be easily used in a variety of clinical settings.
Management
The management of TD involves both non-pharmacological approaches and pharmacological treatments. The best treatment option is primary prevention by following practice guidance for the prescription of antipsychotic medication. These includes limiting prescription to specific indications, using the minimum effective dose, and minimizing, as much as possible, the duration of therapy.
First-line management of TD would be to consider reducing the dose or to discontinue the antipsychotic medication when clinically feasible, but for many patients this poses a serious concern due to relapse potential. Adjusting antipsychotic medications, either by reducing the dose or switching to a different medication, is another common strategy. Consider switching to a lower-risk antipsychotic, particularly from typical to atypical antipsychotics, which generally have a lower risk of causing TD. [8]
A decision to initiate pharmacological treatment—an underpinning of a shared decision-making conversation with the patient and family/caregivers—should be based on the severity and impact TD has on the person’s life and functioning.
Utilize medications specifically approved for the treatment of TD. These include:
These treatments can significantly reduce the severity of symptoms and improve quality of life and outcomes.
Non-pharmacological Approaches:
Patient Education: Educate patients and caregivers about TD, symptoms, potential treatments, and the importance of regular monitoring.
Physical Therapy: Help manage symptoms through targeted exercises that can improve voluntary muscle control and reduce involuntary movements.
Occupational Therapy: Assist in adapting daily activities and work environments to better accommodate any physical limitations caused by TD.
Counseling and Support Groups: Offer psychological support to help patients cope with the emotional and social impacts of TD; support groups can provide a community of understanding and shared experiences.
Timely assessment and ultimate management of TD can lead to mitigation of the overall impact of TD, and to hopefully improve long-term patient outcomes. [9]
As healthcare providers it is critical that we all become more aware of TD and shine a spotlight on how to effectively understand and manage TD. Increased awareness, educating healthcare providers, proactive assessment, and effective management and treatment strategies can help alleviate the impacts of TD, improving the quality of life for so many patients.
To truly honor Tardive Dyskinesia Awareness Week and Mental Health Awareness Month, we must all become more aware of TD and shine a spotlight on how to effectively understand and manage TD. For healthcare providers, this required increased attention to diagnosis and personalized care in management. For patients and caregivers, it involves seeking knowledge and support. Together, by enhancing our awareness and refining our approaches, we can significantly better the lives of those affected by TD. Let's make this commitment not just this week, but every day moving forward.
References:
[1] American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th edition. Arlington, VA: American Psychiatric Association, 2013:712.
[2] Caroff SN, Ungvari GS, Owens DGC. Historical perspectives on tardive dyskinesia. J Neurol Sci. 2018;389:4-9.
[3] Jackson R, Brams, MN, Citrome L, et al. Assessment of the Impact of Tardive Dyskinesia in Clinical Practice: Consensus Panel Recommendations. Neuropsychiatric Disease and Treatment 2021:17 1589–1597
[4] Lerner PP, Miodownik C, Lerner V. Tardive dyskinesia (syndrome): Current concept and modern approaches to its management. Psychiatry Clin Neurosci. 2015; 69:321–34
[5] RE-KINECT is a prospective real-world screening study that included 739 patients from 37 outpatient psychiatry practices in the U.S. The study objective was to assess the presence and impact of possible tardive dyskinesia (TD) and describe the associated disease burden in a cohort of patients with one or more psychiatric disorders and a cumulative lifetime exposure to antipsychotic medication of three months or more.
[6] American Psychiatric Association. Treatment of patients with schizophrenia: tardive dyskinesia. Available from: https://www.guidelinecentral.com/shop/treatment-patients-schizophrenia-tardive-dyskinesia-guidelines
[7] Keepers GA, Fochtmann LJ, Anzia JM, et al. American Psychiatric Association practice guideline for the treatment of patients with schizophrenia. Am J Psychiatry. 2020;177:868–872.
[8] Ricciardi L, Pringsheim T, Barnes TRE, et al. Treatment Recommendations for Tardive Dyskinesia. The Canadian Journal of Psychiatry / La Revue Canadienne de Psychiatrie 2019, Vol. 64(6) 388-399
[9] Jackson R, Brams, MN, Citrome L, et al. Assessment of the Impact of Tardive Dyskinesia in Clinical Practice: Consensus Panel Recommendations. Neuropsychiatric Disease and Treatment 2021:17 1589–1597
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