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Living with locked-in syndrome: an explorative study on health care situation, communication and quality of life.
[locked-in syndrome]
to
explore
and
describe
the
health
care
situation
,
the
use
of
aids
,
the
way
of
communicating
and
the
quality
of
life
of
Locked-
in
syndrome
patients
in
Flanders
(
Belgium
)
and
to
collect
information
on
their
fulfilled
and
unfulfilled
needs
.
in
depth
interviews
with
eight
LIS-patients
by
means
of
an
extensive
questionnaire
consisting
of
five
parts
:
(
i
)
general
information
and
medical
history
,
(
ii
)
health
care
,
rehabilitation
and
follow-up
,
(
iii
)
speech
and
communication
,
(
iv
)
quality
of
life
,
(
v
)
needs
and
problems
experienced
.
the
patients
'
condition
,
mostly
caused
by
ischemic
stroke
,
persisted
for
a
mean
period
of
6
years
8
months
.
Their
mean
age
was
41
;
10
years
.
At
the
moment
of
our
study
all
the
patients
were
living
at
home
.
Care
was
provided
by
an
extensive
care
team
.
Some
recovery
of
head
and
neck
movements
was
mentioned
,
recovery
of
upper
and
lower
limb
mobility
however
was
very
limited
.
Most
patients
use
an
alphabet
system
to
communicate
,
all
of
them
had
access
to
and
made
use
of
a
PC
with
internet
connection
.
Except
for
the
domain
of
physical
functioning
,
the
quality
of
life
scores
of
our
patient
group
are
rather
high
.
As
for
unfulfilled
needs
,
half
of
the
patients
experience
a
lack
of
information
on
their
condition
and
a
lack
of
appropriate
information
on
(
communication
)
aids
.
most
results
seem
to
be
in
line
with
those
of
other
studies
,
though
larger
scale
and
follow-up
studies
are
needed
to
confirm
these
findings
.
Diseases
Validation
Diseases presenting
"five parts"
symptom
locked-in syndrome
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