This pilot study aimed to use social media listening (SML) to gain insights into the patient and caregiver experiences of tardive dyskinesia (TD), a movement disorder associated with prolonged use of dopamine receptor-blocking agents like antipsychotics. Social media platforms, blogs, and forums were analyzed for patient and caregiver posts between March 2017 and November 2019. A total of 261 posts were identified, with 107 used for analysis. The study found that 64% of the posts expressed negative sentiments, with patients often feeling angry about the medication causing their symptoms and insecure about societal acceptance.

The study also revealed that movement-related symptoms were the most common concern for patients, with emotional distress being a significant aspect of their experience. Patients described feelings of anger and insecurity, particularly related to the stigma of having symptoms from a medication used for another condition. The findings suggest that SML can be a valuable tool in understanding the unmet needs of patients with TD. Researchers stress that the emotional and social challenges associated with the condition are significant and should be considered when addressing TD in clinical settings.

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. doi: 10.1186/s12888-021-03074-9.