Patients with tardive dyskinesia (TD) often expressed anger about developing movement-related symptoms from using medication to treat a different disorder and insecurity over how other people viewed their symptoms, according to an analysis of social media posts published online in BMC Psychiatry.
“This study offers an unfiltered glimpse into patients’ experiences with TD, which might have been more difficult to obtain in formal clinical or research settings,” wrote researchers from Neurocrine Biosciences Inc., San Diego, California. “Although the study was limited by various methodological constraints, these patients’ experiences with TD—as described in social media posts expressing anger and insecurity—may help clinicians better understand the type of TD-specific care that patients may need.”
The pilot study focused on 102 social media posts from patients and 5 posts from caregivers, all of whom were from the United States. Nearly half of the posts were from online forums, and an additional third were from Twitter. Other sources were Instagram, Tumblr, and blogs.
The posts fell into 3 major themes, according to the study: anger, insecurity, and symptom-related posts. Patients expressed anger about the negative effect of TD symptoms and movements in their lives. They also expressed insecurity through posts about how movement-related symptoms made them feel “ugly, weird, or self-conscious,” unaccepted by society, and uncomfortable in their skin.
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“Some feared being judged by others or being asked about their twitching,” researchers reported. “A few indicated that they would rather be dead than have TD.”
Symptom-related posts included symptom descriptions as well as struggles finding adequate treatment.
Providers may be able to ease patient distress by discussing treatments such as valbenazine and deutetrabenazine, providing resources such as the Talk About TD website and information on support groups, and even engaging with patients through social media in supportive, educational ways, researchers advised.
“Most importantly,” they added, “simple follow-up questions about mental well-being during regular visits, coupled with referrals for psychosocial counseling as needed, would help clinicians gain better insights into the experiences of their patients and allow patients to feel that their concerns are being addressed.”
—Jolynn Tumolo
Reference
Farrar M, Lundt L, Franey E, Yonan C. Patient perspective of tardive dyskinesia: results from a social media listening study. BMC Psychiatry. 2021;21(1):94.
