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The prevalence and characteristics of patients with classic locked-in syndrome in Dutch nursing homes.
[locked-in syndrome]
To
establish
the
point
prevalence
and
characteristics
of
patients
with
locked-
in
syndrome
(
LIS
)
,
particularly
of
the
classic
type
,
residing
in
Dutch
nursing
homes
,
a
cross-sectional
survey
of
Dutch
nursing
homes
was
conducted
.
The
classic
form
of
LIS
was
defined
according
to
the
criteria
of
the
American
Congress
of
Rehabilitation
Medicine
(
1995
)
.
All
Dutch
long
-term
care
organisations
(
n
=
187
)
were
asked
if
they
had
any
patients
with
classic
LIS
as
of
December
5
,
2011
.
The
treating
Elderly
Care
Physicians
were
then
contacted
to
provide
patient
characteristics
.
Of
all
organisations
,
91
.
4
%
responded
,
and
11
organisations
reported
a
total
of
12
patients
.
After
analysing
the
questionnaires
,
it
was
determined
that
ten
patients
had
LIS
,
and
two
patients
were
characterised
with
vegetative
state
.
Only
two
patients
met
the
criteria
for
classic
LIS
,
while
six
patients
showed
partial
LIS
.
One
of
these
patients
was
admitted
to
the
nursing
home
after
December
5
,
2011
,
and
was
therefore
,
excluded
.
LIS
without
accompanying
pontine
lesion
was
observed
in
the
remaining
two
patients
.
For
the
first
time
,
the
prevalence
of
classic
LIS
has
been
established
at
0
.
7
/
10
,
000
somatic
nursing
home
beds
in
all
Dutch
long
-term
care
organisations
.
Possible
explanations
for
this
low
prevalence
could
be
the
Dutch
provision
of
home
care
or
the
influence
of
end-of-life
decisions
,
such
as
euthanasia
and
withholding
or
withdrawing
all
medical
treatment
,
including
artificial
nutrition
and
hydration
.
These
alternate
outcomes
should
be
explored
in
further
studies
.
Diseases
Validation
Diseases presenting
"first time"
symptom
achondroplasia
acute rheumatic fever
adrenal incidentaloma
adrenomyeloneuropathy
alpha-thalassemia
aniridia
aromatase deficiency
canavan disease
carcinoma of the gallbladder
cholangiocarcinoma
classical phenylketonuria
congenital adrenal hyperplasia
congenital toxoplasmosis
cowden syndrome
cushing syndrome
cutaneous mastocytosis
dedifferentiated liposarcoma
dentin dysplasia
dentinogenesis imperfecta
dracunculiasis
dystrophic epidermolysis bullosa
epidermolysis bullosa simplex
erdheim-chester disease
erythropoietic protoporphyria
esophageal adenocarcinoma
esophageal carcinoma
esophageal squamous cell carcinoma
fabry disease
familial mediterranean fever
gm1 gangliosidosis
harlequin ichthyosis
heparin-induced thrombocytopenia
hirschsprung disease
hodgkin lymphoma, classical
holt-oram syndrome
hydrocephalus with stenosis of the aqueduct of sylvius
junctional epidermolysis bullosa
kabuki syndrome
kallmann syndrome
liposarcoma
locked-in syndrome
lymphangioleiomyomatosis
malignant atrophic papulosis
megacystis-microcolon-intestinal hypoperistalsis syndrome
monosomy 21
neuralgic amyotrophy
oculocutaneous albinism
oligodontia
omenn syndrome
oral submucous fibrosis
papillon-lefèvre syndrome
pendred syndrome
phenylketonuria
primary effusion lymphoma
primary hyperoxaluria type 1
severe combined immunodeficiency
sneddon syndrome
triple a syndrome
trochlear dysplasia
von hippel-lindau disease
waldenström macroglobulinemia
well-differentiated liposarcoma
werner syndrome
wiskott-aldrich syndrome
wolf-hirschhorn syndrome
x-linked adrenoleukodystrophy
zellweger syndrome
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