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 medinfo@neurocrine.com 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