Real-time sharing and expression of migraine headache suffering on Twitter: a cross-sectional infodemiology study.
BACKGROUND
Although population studies have greatly improved our understanding of migraine, they have relied on retrospective self-reports that are subject to memory error and experimenter-induced bias. Furthermore, these studies also lack specifics from the actual time that attacks were occurring, and how patients express and share their ongoing suffering.


OBJECTIVE
As technology and language constantly evolve, so does the way we share our suffering. We sought to evaluate the infodemiology of self-reported migraine headache suffering on Twitter.


METHODS
Trained observers in an academic setting categorized the meaning of every single "migraine" tweet posted during seven consecutive days. The main outcome measures were prevalence, life-style impact, linguistic, and timeline of actual self-reported migraine headache suffering on Twitter.


RESULTS
From a total of 21,741 migraine tweets collected, only 64.52% (14,028/21,741 collected tweets) were from users reporting their migraine headache attacks in real-time. The remainder of the posts were commercial, re-tweets, general discussion or third person's migraine, and metaphor. The gender distribution available for the actual migraine posts was 73.47% female (10,306/14,028), 17.40% males (2441/14,028), and 0.01% transgendered (2/14,028). The personal impact of migraine headache was immediate on mood (43.91%, 6159/14,028), productivity at work (3.46%, 486/14,028), social life (3.45%, 484/14,028), and school (2.78%, 390/14,028). The most common migraine descriptor was "Worst" (14.59%, 201/1378) and profanity, the "F-word" (5.3%, 73/1378). The majority of postings occurred in the United States (58.28%, 3413/5856), peaking on weekdays at 10:00h and then gradually again at 22:00h; the weekend had a later morning peak.


CONCLUSIONS
Twitter proved to be a powerful source of knowledge for migraine research. The data in this study overlap large-scale epidemiological studies, avoiding memory bias and experimenter-induced error. Furthermore, linguistics of ongoing migraine reports on social media proved to be highly heterogeneous and colloquial in our study, suggesting that current pain questionnaires should undergo constant reformulations to keep up with modernization in the expression of pain suffering in our society. In summary, this study reveals the modern characteristics and broad impact of migraine headache suffering on patients' lives as it is spontaneously shared via social media.
Headache and Orofacial Pain Effort (HOPE), Biologic and Materials Sciences Department, School of Dentistry, University of Michigan, Ann Arbor, MI, United States.
Thiago D
TD
Nascimento
Marcos F
MF
DosSantos
Theodora
T
Danciu
Misty
M
DeBoer
Hendrik
H
van Holsbeeck
Sarah R
SR
Lucas
Christine
C
Aiello
Leen
L
Khatib
MaryCatherine A
MA
Bender
Jon-Kar
JK
Zubieta
Alexandre F
AF
DaSilva
D002940:Circadian Rhythm; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008881:Migraine Disorders / Q000145:classification / Q000453:epidemiology; D015995:Prevalence; D017678:Sex Distribution; D061108:Social Media; D009626:Terminology as Topic
Twitter; epidemiology; headache; migraine; social media