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Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group.
[locked-in syndrome]
Amyotrophic
lateral
sclerosis
(
ALS
)
is
a
progressive
neurodegenerative
disease
with
a
poor
prognosis
.
Survival
and
quality
of
life
of
ALS
patients
have
improved
through
the
implementation
of
multidisciplinary
approaches
,
the
use
of
percutaneous
gastrostomy
and
of
noninvasive
(
NIV
)
or
invasive
ventilation
.
The
question
of
whether
or
not
to
propose
invasive
ventilation
(
by
tracheostomy
:
TPPV
)
to
ALS
patients
remains
a
matter
of
debate
.
The
study
reviews
the
medical
literature
,
the
practice
in
three
Swiss
and
two
large
French
ALS
expert
centres
and
reports
the
results
of
a
workgroup
on
invasive
ventilation
in
ALS
.
Improved
management
of
secretions
and
use
of
different
interfaces
allows
NIV
to
be
used
24
-
hours
-a-
day
for
prolonged
periods
,
thus
avoiding
TPPV
in
many
cases
.
TPPV
is
frequently
initiated
in
emergency
situations
with
lack
of
prior
informed
consent
.
TPPV
appears
associated
with
a
lesser
quality
of
life
and
a
higher
risk
of
institutionalisation
than
NIV
.
The
high
burden
placed
on
caregivers
who
manage
ALS
patients
is
a
major
problem
with
a
clear
impact
on
their
quality
of
life
.
Current
practice
in
Switzerland
and
France
tends
to
discourage
the
use
of
TPPV
in
ALS
.
Fear
of
a
"
locked-
in
syndrome
"
,
the
high
burden
placed
on
caregivers
,
and
unmasking
cognitive
disorders
occurring
in
the
evolution
of
ALS
are
some
of
the
caveats
when
considering
TPPV
.
Most
decisions
about
TPPV
are
taken
in
emergency
situations
in
the
absence
of
advance
directives
.
One
exception
is
that
of
young
motivated
patients
with
predominantly
bulbar
disease
who
"
fail
"
NIV
.
Diseases
Validation
Diseases presenting
"cognitive disorders"
symptom
alexander disease
locked-in syndrome
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