Patients With Tardive Dyskinesia Feel Unheard, Social Media Listens

The first study to gather unsolicited patient responses via social media finds 3 negative themes.

The first study to use social media listening (SML) analysis of unsolicited patient and caregiver insights might give a better look into the perspective of patients with tardive dyskinesia (TD).1

TD, a difficult movement disorder, is commonly associated with prolonged exposure to dopamine receptor blocking agents such as antipsychotics. Based on gathered data, it also has a number of patients left feeling unheard.

“Because the emotions and sentiments of patients (and sometimes caregivers) on social media platforms are unsolicited and unfiltered, SML methods… offer a more comprehensive context for understanding how patients experience TD and the unmet needs in this therapeutic space,” Farrar et al. wrote in their discussion. “As indicated in the recent FDA guidance on patient engagement for drug development,2 social media can allow access to difficult-to-reach populations, provide accurate and automatic capture of data, and possibly result in greater self-disclosure by patients.”1

For this pilot study, researchers collected patient insights from 261 social media posts made by patients and caregivers, mainly on blog forums and Twitter, using predefined search terms. Of the 261 posts, 107 were used for analysis. Overall, the sentiments leaned negative, with 64% responses being negative, 33% neutral, and only 3% positive.

Three themes emerged: anger, insecurity, and symptoms. Common sentiments showed patients were angry about developing TD from a medication used to treat another of their conditions, insecure about feeling unaccepted by society, and afraid of being judged.

All posts were gathered from publicly available, nonpassword protected sites. In order to protect the identity of users, all personal information was excluded prior to any manual review of the content and verbatim quotes were not included in the final report.

While researchers admitted that the study might be limited by a small sample size and reliance on self-reporting, they concluded social media may help convey unmet patient needs that do not get addressed in clinical discussions.

References

1. Farrar M, Lundt L, Franey E, Yonan C. Patient perspective of tardive dyskinesia: results from a social media listening study. BMC Psychiatry. 2021;21(94).

2. US Food and Drug Administration. Patient-focused drug development: collecting comprehensive and representative input guidance for industry, Food and Drug Administration staff, and other stakeholders. Center for Drug Evaluation and Research; 2020.