Patient Perspective of Tardive Dyskinesia: Results from a Social Media Listening StudyLeslie Lundt, Mallory Farrar, Ericha Franey, Chuck Yonan
Neurocrine Biosciences, Inc., San Diego, CA
■ Analysis of the top sentiment terms indicated that 64% were negative, 33% were neutral, and 3% were positive (Figure 4)
Figure 4. Sentiment Analysis
3%
33%
64%
Negative Positive Neutral
A. Sentiment B. Word Cloud
Colors in the word cloud correspond to disease characteristics (yellow) and sentiments (blue)
■ All of the 107 analyzed posts were from the United States; 80% were from online forums or Twitter (Figure 2)
Figure 2. Sources of Social Media Posts (N=107)
33%Twitter
47%Forums
7% Instagram
5% Tumblr
5% Blogs3% Other
■ The most frequently mentioned disease characteristics and sentiments are presented in Figure 3
Figure 3. TD-Related Terms from Social Media Sources
Feel 31
Worse 17
Symptom 14
Better 12
Permanent 11
Involuntary 10
Mental 10
Love 9
Schizophrenia 8
Kind 8
Problem 8
F*ck 7
Weird 7
Horrible 7
Tired 6
Scary 6
Upset 5
Hope 5
Crazy 5
Killing 5
Anxiety 5
Good 10
7Hate
Number of MentionsB. Top Sentiments0 5 10 15 20 25 30 35
Number of Mentions
Hand 24Side effect 21
Tongue 20Face 19
Movement 16Twitch 16
Mouth 11Tremor 10
Involuntary 10Pain 10Jaw 9
Sleep 9Shake 8
Tic 8Muscle 8
Damage 8Body 7
Popping 6Head 6
Lip 5Feet 4Neck 4
Chew 4
Kicks 4
Uncontrollable 4
Sore 4
Spasm 4Jerky 4
Thumb 3Arm 3Eye 2Leg 2
Hurt 2Finger 2
Speech 2Nose 2
Torture 2Ears 2
Brain 14
A. Disease Characteristics0 5 10 15 20 25 30 35
INTRODUCTION ■ Tardive dyskinesia (TD) is a persistent and potentially disabling movement disorder associated with prolonged exposure to dopamine receptor blocking agents such as antipsychotics1
■ More research is needed to better understand patient perspectives of TD that are not captured by clinical assessments
■ With social media listening (SML),2,3 content from various social media sources can be analyzed to better understand how patients and caregivers experience and communicate about TD
■ The objective of this SML study was to access the unsolicited thoughts and emotions of individuals coping with TD, including those who might be unwilling to participate in formal clinical studies
METHODS ■ A comprehensive search was performed for publicly available, English-language, online content posted between March 2017 and November 2019
■ Using a NetBaseTM analytics program, pre-defined criteria were used to search posts from patients with presumed TD (or caregivers of individuals with presumed TD)
■ Posts were manually curated and reviewed for quality and validity and to classify key symptoms, sentiments, and themes; direct quotes from posts are not presented for privacy reasons
RESULTS ■ 261 posts from patients or caregivers (“patient insights”) were identified for manual review; 107 were used for analyses (Figure 1)
Figure 1. Selection of Posts
English-Language Social Media Content Posted from March 2017 to November 2019
Search Terms: “tardive dyskinesia” and spelling variations (e.g., “tardarive diskensia”)
Search Results(N=261)
Posts Expressing Sentiment(N=179)
Publicly Available Posts (N=107)
Posts Included in Analyses(N=107)
82 ExcludedNo TD in post 3Fear of TD 3Not about TD 12No sentiment/emotion 64
72 Excluded Facebooka 72
aSocial media platforms which did not provide public access to information/posts (e.g., Facebook) were excluded.
■ The posts were grouped into 3 major themes: anger, insecurity, and symptoms (Table 1)
Table 1. Theme Analysis
Theme Specific Aspect
Anger Frustrated or spiteful
Extreme TD symptoms affecting life
Recovering but terrible experience
Suffering because of TD
Insecurity Feel ugly, weird, or insecure
Feel unaccepted by society and uncomfortable in own skin
Rather be dead
Fear of people judging or asking questions
Symptoms Encourage open discussion of symptoms
Struggles dealing with symptoms and treatment
Details of symptoms with descriptions like “raw” or “jerky”
CONCLUSIONS ■ The patient perspective generated from analyzing social media can help in understanding the needs of a heterogeneous patient population with TD and methods to effectively communicate with them
■ Posts from caregivers were limited and tended to focus on patient experience; more research on caregiver burden is needed
■ This SML analysis indicates that patients with presumed TD are concerned with their symptoms, which can result in strong feelings of anger and insecurity
REFERENCES1. Jain R, Correll CU. J Clin Psychiatry. 2018;79:nu17034ah1c.2. Cook NS, et al. ERJ Open Res. 2019;5(1):00128-2018.3. Cook N, et al. Ophthalmol Ther. 2019;8(3):407-420.
Disclosures: This study was supported by Neurocrine Biosciences, Inc., San Diego, CA. Writing assistance and editorial support were provided by Prescott Medical Communications Group, Chicago, IL. Please email [email protected] if you have any questions on this presentation.
INTENDED FOR PRESENTATION AT THE SOCIETY OF GENERAL INTERNAL MEDICINE ANNUAL MEETING
MAY 6-9, 2020; BIRMINGHAM, ALAVAILABLE ONLINE AT THE NEUROSCIENCE EDUCATION INSTITUTE VIRTUAL POSTER LIBRARY; 2020
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