The Hidden Struggles of Tardive Dyskinesia: Improving Patient Care

Living with tardive dyskinesia (TD) can be an overwhelming experience. Every day, patients living with TD, a debilitating movement disorder caused by long-term use of antipsychotic medications, often go unnoticed and undertreated. It’s time we listen to the hidden struggles faced by TD patients to improve their lives.  

In a recent study led by Dr. Jain at Texas Tech University, School of Medicine-Permian Basin, patients were eligible to take part if they were 17 years of age or older with a current diagnosis of TD and schizophrenia, bipolar disorder (BD), or major depressive disorder (MDD). The recruited patients were provided with a validated online survey and were asked to rate the seven-day impact of TD on one’s physical, psychological, and social lives on a five-point Likert scale, while the professional impact was assessed by the Work Productivity and Activity Impairment Questionnaire.  

Results 
There were 269 respondents with an average age of 40.6 years, primarily White (78.4 percent) with at least post-secondary education (68 percent). The prevalence of self-reported diagnosis was BD (49.8 percent), schizophrenia (27.5 percent), and MDD (22.7 percent) with 79.0 percent prescribed medication for TD. Over the seven days, TD symptom severity was reported as at least moderate (84.8 percent) while 40.2 percent reported severe or very severe.  

Physical Effects 
Patients reported significant physical impairment due to TD. The survey found that 66.2 percent of patients experienced activity impairment due to TD. Simple tasks, like speaking, walking, or eating, become significant challenges, robbing patients of their independence and quality of life. TD can also cause constant pain and discomfort, which can further impact patients' physical functioning. 

Psychological Effects 
TD can have a significant impact on patients' mental well-being. Patients reported feelings of self-consciousness about uncontrollable movements and fearing judgment and rejection from others. The survey found that patients with TD experienced a range of psychological symptoms, including anxiety, depression, and embarrassment. These psychological symptoms not only worsen the overall mental health of patients but also contribute to social isolation and further deterioration of their well-being. These symptoms can be particularly challenging for patients who already have a mental health condition. The psychological impact of TD can also lead to social isolation and further worsen the burden of the condition. 

Social Effects 
TD has a profound impact on patients' social lives. The survey revealed that patients struggled with socializing, attending events, and engaging in hobbies. The embarrassment and self-consciousness caused by TD make it difficult for patients to fully take part in social activities, which lead to feelings of loneliness and isolation. The social stigma associated with TD further compounds the challenges faced by patients, perpetuating a cycle of exclusion and misunderstanding. 

Professional Effects 
TD can also have a profound impact on patients' professional lives. The survey found that employed patients with TD experienced significant work impairment, including 29.1 percent absenteeism, 68.4 percent presenteeism, and 73.5 percent overall work impairment. These impairments can affect patients' ability to perform their job duties and can lead to reduced work hours and job loss and create financial strain. The inability to perform job duties due to TD can lead to frustration and a sense of helplessness. 

This publication serves as a wake-up call to the medical community calling for recognition and action to address the physical, psychological, social, and professional challenges faced by TD patients. Addressing the hidden struggles of TD patients will require vigilant monitoring of signs of TD, early intervention and treatment, and advocacy to improve the overall quality of life for patients. More research and development of new treatment options specifically targeting TD and antipsychotic medications with minimal side effects are essential to alleviate the burden on patients' lives.   

REFERENCES 
Jain, Rakesh, Rajeev Ayyagari, Debbie Goldschmidt, Mo Zhou, Stacy Finkbeiner, and Sam Leo. 2023. “Impact of Tardive Dyskinesia on Physical, Psychological, Social, and Professional Domains of Patient Lives: A Survey of Patients in the United States.” The Journal of Clinical Psychiatry 84 (3). https://doi.org/10.4088/JCP.22m14694.