Rare Diseases Symptoms Automatic Extraction
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Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group.
[thoracic outlet syndrome]
There
are
currently
many
disease-
specific
groups
on
Facebook
in
which
patients
may
take
an
active
part
(
Greene
,
Choudhry
,
Kilabuk
,
&
Shrank
,
2011
)
.
Although
uses
and
gratifications
of
patient-disease
groups
have
begun
to
be
identified
for
chronic
diseases
,
rare
diseases
have
been
omitted
,
even
though
they
collectively
affect
roughly
30
million
people
in
the
United
States
and
350
million
people
worldwide
.
This
study
is
a
content
analysis
of
one
Facebook
rare
disease
patient
group
,
the
Thoracic
Outlet
Syndrome
(
TOS
)
Awareness
group
.
All
wall
posts
were
recorded
and
content
analyzed
for
cognitive
and
affective
categories
and
subcategories
between
October
9
,
2011
(
date
of
site
origin
)
,
and
May
1
,
2012
.
Analysis
of
cognitive
needs
indicated
TOS
patients
used
the
site
more
to
share
information
about
their
own
TOS
symptoms
and
journey
with
diagnosis
than
to
seek
information
.
Analysis
of
affective
needs
found
patients
were
more
likely
to
use
the
site
to
give
support
and
encouragement
to
others
than
to
express
concerns
and
complaints
.
The
complaints
they
did
express
were
primarily
related
to
their
frustration
with
the
general
medical
community
's
perceived
inability
to
diagnose
and
understand
their
disease
or
to
question
a
specific
doctor
's
diagnosis
/
recommendation
.
Results
point
to
needs
specific
to
TOS
patients
that
uses
and
gratifications
research
can
help
clarify
.
Diseases
Validation
Diseases presenting
"rare diseases have been omitted"
symptom
thoracic outlet syndrome
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