Emotion, stress cues in social media posts might be early warnings in
epilepsy deaths
Date:
March 22, 2022
Source:
Binghamton University
Summary:
A new study from an international team of researchers demonstrates
that social media could be used to detect behaviors preceding
sudden unexpected death in epilepsy (SUDEP), the leading cause of
death in people with uncontrolled epileptic seizures.
FULL STORY ==========================================================================
A new study from an international team of researchers -- including two
from Binghamton University -- demonstrates that social media could be used
to detect behaviors preceding sudden unexpected death in epilepsy (SUDEP),
the leading cause of death in people with uncontrolled epileptic seizures.
==========================================================================
The findings, recently published in the journal Epilepsy & Behavior,
reveal that the activity of epilepsy patients in social media increased
before their sudden deaths. These changes in digital behavior could be
used as early warning signals to put preventive interventions for SUDEP
into practice.
SUDEP occurs when a person with epilepsy dies suddenly and no reason
for death is found. Although the physiological mechanisms underlying
SUDEP are still a mystery, people with frequent seizures are known to
be at higher risk. The best preventive strategy currently is to keep
seizures under control through medication, but reducing stress and
keeping triggers in check are also key to decreasing the risk. However, measuring stress and other mood states can be difficult.
A study developed by researchers at Binghamton University, Indiana
University and the Instituto Gulbenkian de Cie^ncia (IGC) in Portugal
explored the potential of using social media to identify behavior
signatures that might predict SUDEP.
"We instantly know when our best friend is not OK," said Rion Brattig
Correia, co-first author of the study, a researcher at IGC and a visiting research scientist at Binghamton University. "They are mumbling, talking
too much or perhaps too little, eye contact is different, their tone
is off -- we just know it. Sometimes we know it over the phone, only
after a few words. What if by detecting this sudden behavioral change,
we could save a friend's life?" Building on these thoughts, the study
examined the Facebook timelines of six epilepsy patients who died from
SUDEP, using various tools to decipher human emotion and any stress
markers hidden in their posts.
==========================================================================
"The first thing we tried was simply to answer the question of whether
the amount of written text was increased in the platform right before
their death.
And that's what we found," Correia said. "For five subjects, the number of words written was significantly higher in their final days in comparison
to the rest of their timeline." In addition, the type of words used by
the subjects changed and there were drastic sentiment shifts in their
posts in the weeks preceding their death.
"We found significant alterations in the patient's digital behavior that
could be picked up as a signal by our algorithms," said Ian B. Wood from Indiana University and co-first author of the study.
These changes in the patient's social media engagement, as well as in the sentiment behind their publications, may serve as possible early-warning signals for SUDEP and guide preventive interventions.
"We thought that machine learning could be very useful to uncover
patient behaviors and outcomes from the wide array of unconventional data
out there, such as social media," said Lui's M. Rocha, George J. Klir
Professor of Systems Science at Binghamton and principal investigator
at IGC.
========================================================================== Rocha led the cross-university group for the study, which was sponsored
by the National Institutes of Health. The interdisciplinary work involved informatics/ complex systems researchers, clinical/behavioral epilepsy scientists and support from the Epilepsy Foundation of America.
"In general, SUDEP studies do not consider digital behavioral data as we
did here, but focus only on physiological and clinical data. As far as we
know, this is the first time this kind of data was used in the study of
SUDEP," said principal investigator Wendy Miller, an epilepsy specialist
from the School of Nursing at IU who also contributed to the study.
She acknowledged that the inclusion of this digital data could offer a complementary view of patient behavior leading up to SUDEP that is often
missed during clinical consultations: "Any advances in this area are
likely to have a significant impact on the lives of families affected."
To validate the predictive power of these behavioral signals extracted
from social media, the researchers intend to mount clinical studies
involving more people to collect more data. If the digital behavior of
patients proves to be useful at predicting SUDEP, the analysis could
be expanded to platforms in addition to Facebook and possibly prevent unnecessary deaths.
"The method we employed could be applied to any digital behavior data,
such as SMS or chat exchange, phone calls and other ways," Wood said.
Sponsored by the NIH's National Library of Medicine, the team is
working on a personalized web service for epilepsy, myAura, which will
include diverse clinical and non-clinical data, such as self-reported
patient entries regarding seizures, medication adherence and physician encounters. The web service also will include the option for users
to donate their social media timelines, making this data more easily
accessible for larger studies.
========================================================================== Story Source: Materials provided by Binghamton_University. Note: Content
may be edited for style and length.
========================================================================== Journal Reference:
1. Ian B. Wood, Rion Brattig Correia, Wendy R. Miller, Luis
M. Rocha. Small
cohort of patients with epilepsy showed increased activity on
Facebook before sudden unexpected death. Epilepsy & Behavior,
2022; 128: 108580 DOI: 10.1016/j.yebeh.2022.108580 ==========================================================================
Link to news story:
https://www.sciencedaily.com/releases/2022/03/220322122814.htm
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