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A Content Analysis of Cognitive and Affective Uses of Patient Support Groups for Rare and Uncommon Vascular Diseases: Comparisons of May Thurner, Thoracic Outlet, and Superior Mesenteric Artery Syndrome.
[thoracic outlet syndrome]
Rare
disease
patients
are
the
predominant
group
of
patients
who
are
now
connecting
online
to
patient
support
groups
,
yet
research
on
their
uses
of
support
groups
has
received
little
attention
.
This
is
a
content
analysis
of
three
vascular
diseases
of
differing
degrees
of
rarity
.
Wall
posts
from
Facebook
patient
support
groups
for
May
Thurner
syndrome
,
thoracic
outlet
syndrome
,
and
superior
mesenteric
artery
syndrome
were
analyzed
over
a
period
of
two
years
.
Using
Uses
and
Gratifications
as
the
theoretical
framework
,
the
study
purpose
was
to
assess
how
variations
in
health
condition
and
rarity
of
condition
affect
online
support
group
user
needs
.
Results
indicated
common
main
cognitive
and
affective
uses
across
conditions
,
indicating
a
consistent
pattern
of
needs
communicated
by
all
patients
.
However
,
there
were
nuanced
differences
in
subcategories
of
cognitive
and
affective
uses
between
the
most
and
least
rare
disorders
,
which
inform
areas
for
tailored
support
mechanisms
.
Additionally
,
these
vascular
patients
used
their
respective
support
groups
primarily
for
cognitive
reasons
,
especially
for
the
rarest
conditions
,
which
informs
of
basic
medical
informational
needs
these
patients
face
related
to
tests
,
treatment
,
surgery
,
and
diagnoses
.
Diseases
Validation
Diseases presenting
"cognitive reasons"
symptom
thoracic outlet syndrome
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