Tardive dyskinesia: coordinating care between providers

Tardive dyskinesia (TD) is a neurological and movement disorder that is most often associated with certain neuroleptic medications (also called antipsychotic medications). These medications are used in the treatment of schizophrenia, bipolar disorder, and other psychiatric disorders. Additionally, TD can occur with other types of medications, including certain antidepressants, anti-seizure medications, and medications for a stomach disorder called gastroparesis.

TD causes involuntary movements that can affect the face and other parts of the body, including:

• Facial movements such as grimacing, frowning, rapid eye blinking, chewing motions, puffing out cheeks, smacking or puckering the lips, rolling the tongue inside the cheeks, or darting the tongue in and out of the mouth.
• Repetitive movements of the limbs, such as finger tapping, hand wringing, swinging the legs, or tapping the toes. Movements of the trunk and/or neck, such as twisting, rocking, or swaying, shrugging, or thrusting motions.

The possibility of TD should be discussed with a healthcare provider prior to starting treatment with any medication that has the potential to cause TD. People taking medications associated with TD should be monitored for these signs and symptoms so treatment can begin as early as possible.

Treatment for TD

Different people with TD will have different treatment needs. A treatment plan will need to balance the need for neuroleptics (or other TD-associated medications) with therapies to manage TD, such as medications to reduce symptoms.

For example, a treatment plan may involve switching to a different neuroleptic medication, plus taking a medication that helps reduce and control involuntary movements. As always, it’s worth mentioning that changes to medications must always be made under the guidance of a healthcare provider.

Care coordination is essential

While treatment for TD is typically overseen by a neurologist (often a type of neurologist called a movement disorders specialist), treatment will most likely involve several healthcare providers. For example, a person with schizophrenia will need to continue to work with a psychiatrist.

Other members of a treatment team can include a primary care provider, other types of mental health professionals, social workers, physical therapists, occupational therapists, and in some cases, speech-language pathologists. A pharmacist can be a valuable source of information about medication interactions, side effects, dosing instructions, and other factors that need to be considered when a person is taking multiple medications.

It’s important that the different members of a TD care team have open lines of communication with one another. This is called care coordination.

Here are two strategies that can help.

Designate a point person

Consider designating one healthcare provider as your "point person." This provider will maintain an overview of the different aspects of treatment and care for TD, including diagnosis, medical history, monitoring of symptoms, treatments prescribed, and contact information for your other healthcare providers. In many cases, this will be a neurologist.

Organize a personal health record

A personal health record is a file that contains all information related to your health. Maintaining this record helps ensure that this information is available—or can easily be made available—to all of your healthcare providers. A personal health record should contain:

• Test results including liver function tests and imaging studies
• Evaluations and workups from specialists
• Treatment records, including medications you’ve been prescribed and medical procedures
• Contact information for all of your healthcare providers
• Insurance information
• Copies of bills, receipts, explanation of benefits documents, and other information related to the financial aspects of treatment

Your personal health record can also include your own notes from appointments, including questions you’ve asked your healthcare providers and information supplied by your healthcare providers.

Remember, TD requires individualized treatment and care. For questions about your diagnosis, symptoms, and treatment options, a healthcare provider will be your best source of information.