Objective: To use social media listening (SML) to understand the impact of symptoms on patients with assumed/self-reported tardive dyskinesia (TD).

Background: TD is a persistent and potentially disabling movement disorder associated with prolonged exposure to dopamine receptor blocking agents such as antipsychotics. With the expanding use of antipsychotics, research is needed to better understand patient perspectives of TD, which clinical assessments may fail to capture. SML, which is recognized by the US FDA as a method that can advance ongoing efforts for more patient-focused drug development, has been used to understand patient experiences in other disease states [1,2]. This is the first study to use SML as a method for evaluating TD from a patient perspective.

Method: In this pilot study, a comprehensive search was performed for publicly available, English-language, online content posted between Mar-2017 and Oct-2019 on social media platforms, blogs, and forums. An analytics platform (NetBase) identified posts containing patient or caregiver experiences of assumed TD using predefined search terms. All posts were manually curated and reviewed to ensure quality and validity of the post and to further classify key symptoms, sentiments, and themes.

Results: A total of 210 posts from patients/caregivers (“patient insights”) were identified for manual review; 107 posts were used for these analyses. Posts were from forums (47%), Twitter (33%), Instagram (7%), Tumblr (5%), blogs (5%), and other online sources (3%). The most common disease characteristics and affected body areas described in posts included: movements, tongue, twitching, face, tremor and tic. A majority of posts (64%) had a negative sentiment; 33% were neutral and 3% were positive. The most common emotional sentiments included: worse/worst, bad, horrible, pain and difficult. Theme analysis revealed that TD often caused patients to feel angry about having TD from a medication that was for a different condition. In addition, patients felt insecure and that TD made them feel ugly, weird, and uncomfortable in their skin.

Conclusion: The perspectives generated from analyzing social media can help convey the unmet needs of patients with TD and the patient lexicon for describing symptoms/burden. This analysis indicated that movement-related symptoms are the most common patient concern, resulting in strong feelings of anger and insecurity.

References: 1. Cook et al, Opthalmol Ther 2019; 2. Cook et al, ERJ 2019

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-perspective-of-tardive-dyskinesia-results-from-a-social-media-listening-study/