Epilepsia Open,
Journal Year:
2025,
Volume and Issue:
unknown
Published: Feb. 1, 2025
Dravet
syndrome
is
a
developmental
and
epileptic
encephalopathy
characterized
by
drug-resistance,
lifelong
seizures,
significant
comorbidities
including
intellectual
motor
impairment.
Receiving
diagnosis
of
challenging
for
parents/caregivers,
little
research
has
focused
on
how
the
should
be
given.
A
Delphi
consensus
process
was
undertaken
to
determine
key
aspects
healthcare
professionals
(HCPs)
consider
when
communicating
parents/caregivers.
Following
literature
search
steering
committee
review,
34
statements
relating
first
consultation
were
independent-
anonymously
voted
(from
1,
totally
inappropriate,
9,
appropriate)
an
international
group
expert
child
neurologists,
neuropsychiatrists,
nurses,
patient
advisory
(PAG)
representatives.
The
divided
into
five
chapters:
(i)
communication
during
consultation,
(ii)
information
delivered
(iii)
points
reiterated
at
end
(iv)
subsequent
consultations,
(v)
around
genetic
testing.
Statements
receiving
≥
75%
votes
with
score
≥7
and/or
median
≥8
considered
consensual.
evaluated
44
HCPs
PAG
representatives
in
round
voting;
29
obtained
strong
consensus,
3
received
good
2
did
not
reach
consensus.
reformulated
resubmitted
4
evaluation
(42/44
voters):
1
remained
final
consensual
recommendations
include
guidance
setting,
disease
convey,
discuss
testing
results,
evolution,
risk
SUDEP,
among
other
topics.
It
hoped
that
this
will
facilitate
better-structured
initial
offer
further
support
parents/caregivers
time
learning
about
syndrome.
Diagnosis
syndrome,
rare
severe
form
childhood-onset
epilepsy,
often
give
parents.
This
study
developed
help
better
structure
personalize
disclosure.
By
following
advice,
doctors
can
provide
more
tailored
families,
improving
their
understanding
management
condition.
Epilepsy Research,
Journal Year:
2023,
Volume and Issue:
200, P. 107280 - 107280
Published: Dec. 14, 2023
Plant-derived
highly
purified
cannabidiol
(CBD)
reduced
the
frequency
of
seizures
associated
with
Lennox-Gastaut
syndrome
(LGS)
and
Dravet
(DS)
improved
overall
condition
patients
in
placebo-controlled
phase
3
clinical
trials.
Anecdotal
reports
also
suggest
a
positive
effect
on
nonseizure
outcomes.
In
this
study,
we
aimed
to
identify,
through
caregiver
survey
which
outcomes
were
most
likely
change
these
patients.
CNS & Neurological Disorders - Drug Targets,
Journal Year:
2024,
Volume and Issue:
23(9), P. 1120 - 1133
Published: Jan. 9, 2024
Epilepsy
is
a
chronic
neurological
condition
characterized
by
unprovoked,
recurrent
seizures.
There
are
several
types
of
epilepsy,
and
the
cause
can
vary.
Some
cases
epilepsy
have
genetic
component,
while
others
may
be
caused
brain
injuries,
infections,
or
other
underlying
conditions.
Treatment
for
typically
involves
anti-seizure
medications
(ASMs),
although
different
approaches,
such
as
surgery
special
diet,
considered
in
specific
cases.
The
treatment
aims
to
effectively
manage
potentially
eliminate
seizures
minimizing
any
accompanying
side
effects.
Many
ASMs
available,
choice
medication
depends
on
factors,
including
type
seizures,
patient's
age,
general
health,
potential
drug
interactions.
For
there
been
significant
advancements
recent
decades,
which
led
approval
many
ASMs.
Newer
offer
broader
range
mechanisms
action,
improved
tolerability
profiles,
reduced
interactions
compared
older
drugs.
This
review
discuss
pharmacological
characteristics,
clinical
applications,
effectiveness,
safety
ASMs,
with
particular
emphasis
various
age
groups,
especially
children.
Moreover,
this
seeks
provide
comprehensive
understanding
ASM
therapy
management,
assisting
physicians
selecting
suitable
their
patients.
Deleted Journal,
Journal Year:
2025,
Volume and Issue:
unknown
Published: Jan. 15, 2025
Zusammenfassung
Zur
Behandlung
der
Epilepsien
stehen
zahlreiche
anfallssuppressive
Medikamente
(ASM)
zur
Verfügung,
die
auf
Basis
klinischer
Studien
für
bestimmte
Indikationen
und
Altersgruppen
zugelassen
sind.
Allerdings
erfordert
Vielzahl
verschiedener
Epilepsietypen
Syndrome
häufig
einen
Off-label-Einsatz
von
ASM,
wenn
Patienten
unter
aktuellen
Therapie
nicht
anfallsfrei
werden
oder
diese
vertragen.
Ähnliches
gilt
Verwendung
verschiedenen
immunsuppressiven
Medikamenten
Anfällen
Epilepsien,
infolge
autoimmuner
Enzephalitiden
auftreten,
mit
dem
Unterschied,
dass
hier
bisher
keinerlei
zugelassene
Substanzen
existieren.
Der
Off-label-Use
beschreibt
Anwendung
eines
Medikaments
außerhalb
zugelassenen
Indikationen,
Dosierungen
Altersgruppen.
Insbesondere
in
Epilepsietherapie
tritt
dies
auf,
etwa
bei
Kindern
Zulassungsalter,
generalisierten
entwicklungsbedingten
epileptischen
Enzephalopathien.
Obwohl
zusätzliche
Behandlungsoptionen
bietet,
führt
es
zu
einigen
Herausforderungen
klinischen
Praxis.
Es
fehlen
oft
klinische
Daten
Sicherheit
Wirksamkeit,
was
Unsicherheiten
Bezug
Dosierung
Nebenwirkungen
führen
kann.
Eine
sorgfältige
Aufklärung
ihrer
Angehörigen
über
Nutzen
Risiken
ist
daher
essenziell,
ebenso
wie
eine
umfassende
Dokumentation
Entscheidungsfindung.
Da
regelhaft
den
Kostenträgern
übernommen
wird,
–
insbesondere
kostenintensiven
neueren
Patentschutz
vorherige
Klärung
Kostenübernahme
sinnvoll,
um
wirtschaftliche
vermeiden.
Epilepsia Open,
Journal Year:
2025,
Volume and Issue:
unknown
Published: Feb. 1, 2025
Dravet
syndrome
is
a
developmental
and
epileptic
encephalopathy
characterized
by
drug-resistance,
lifelong
seizures,
significant
comorbidities
including
intellectual
motor
impairment.
Receiving
diagnosis
of
challenging
for
parents/caregivers,
little
research
has
focused
on
how
the
should
be
given.
A
Delphi
consensus
process
was
undertaken
to
determine
key
aspects
healthcare
professionals
(HCPs)
consider
when
communicating
parents/caregivers.
Following
literature
search
steering
committee
review,
34
statements
relating
first
consultation
were
independent-
anonymously
voted
(from
1,
totally
inappropriate,
9,
appropriate)
an
international
group
expert
child
neurologists,
neuropsychiatrists,
nurses,
patient
advisory
(PAG)
representatives.
The
divided
into
five
chapters:
(i)
communication
during
consultation,
(ii)
information
delivered
(iii)
points
reiterated
at
end
(iv)
subsequent
consultations,
(v)
around
genetic
testing.
Statements
receiving
≥
75%
votes
with
score
≥7
and/or
median
≥8
considered
consensual.
evaluated
44
HCPs
PAG
representatives
in
round
voting;
29
obtained
strong
consensus,
3
received
good
2
did
not
reach
consensus.
reformulated
resubmitted
4
evaluation
(42/44
voters):
1
remained
final
consensual
recommendations
include
guidance
setting,
disease
convey,
discuss
testing
results,
evolution,
risk
SUDEP,
among
other
topics.
It
hoped
that
this
will
facilitate
better-structured
initial
offer
further
support
parents/caregivers
time
learning
about
syndrome.
Diagnosis
syndrome,
rare
severe
form
childhood-onset
epilepsy,
often
give
parents.
This
study
developed
help
better
structure
personalize
disclosure.
By
following
advice,
doctors
can
provide
more
tailored
families,
improving
their
understanding
management
condition.
