epilepsy innovation institute (ei 2016 community survey€¦ · seizure frequency diagnosis...
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1
E P I L E P S Y. C O M
2 0 1 6 CO M M U N I T Y S U R V E YEpilepsy Innovation Institute (Ei2)
2
E P I L E P S Y. C O M
INTRODUCTIONFrom September 8th to November 9th, 2016, epilepsy.com hosted a survey that asked the community the following:
What are the aspects of epilepsy that have greatest impact on patients’ lives?
Where should epilepsy researchers focus?
What are your biggest frustrations?
What is your biggest hope in the
next five years?
1,056
2
INDIVIDUALS PARTICIPATED IN THE SURVEY
1,056
3
E P I L E P S Y. C O M
WHO WERE THESE INDIVIDUALS?
41
NH11
VT2
46NY
MA 32
4RI
DE
CT19PA
51
24
2
NJ
9
WV
21KY
29
OH
39
MI
14
IN
33
IL
WI
22
12
IA
MN
17
19
MO
7
AR
ND2
SD2
NE 2
KS5
OK
8
5
MT
WY
1
CO
41
NM
3
AZ
28
NV
8UT
6
ID
5
CA
71
OR13
WA27
AK
2
HI1
9
ME
33VA
MD
52
4
DC13TN
28NC
10SC
24
GA
6
AL
2
MS
36
FL
11
LA
TX
75
Geographical Distribution of Respondants
61-75
46-60
31-45
16-30
1-15
# of Respondants
Most of you came from the U.S. At least one person from every state responded.
?INTERNATIONAL RESPONDANTS 69
DID NOT SAY
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E P I L E P S Y. C O M
99% of respondents
were people living with epilepsy or family members and caregivers
Responder Type
Seizure Frequency Diagnosis Distribution
Age Distribution
49%
23%
27%
1%
Caregiver
Other
Family Member
Person Living with Epilepsy
All seizure frequency types were represented in the survey.
76% of respondents identified as having been diagnosed with generalized or focal seizures.
1%
21%
15%
18%19%
25%
DailyWeeklyMonthlyYearlyOver a yearNo Response
Generalized Epilepsy
Focal Epilepsy
No specific diagnosis
Dravet Syndrome
Lennox-Gastaut
Tuberous Sclerosis
Other
13%
46%
30%
8%
1%1%
1%
Under 10 10-20 20-30 30-50 50+15% 21% 20% 32% 11%
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E P I L E P S Y. C O M
Which of the following aspects of epilepsy impact your life the most?(Summary Broken Down by Seizure Frequency)
WHAT DID THESE INDIVIDUALS SAY?
When asked to write down what aspects of epilepsy impacted individuals
the most, these were the most common words used:
As one might expect, the aspects that affect people living with epilepsy shift depending on how frequently the seizures occur.
Seve
rity
of s
eizu
res
Side
eff
ects
from
sei
zure
med
icat
ions
Unp
redi
ctab
ility
Lack
of a
cle
ar p
ath
to a
cur
e
Lack
of o
ptim
al tr
eatm
ents
Freq
uenc
y of
sei
zure
s
Com
orbi
ditie
s as
soci
ated
with
epi
leps
y
Inab
ility
to c
ontr
ol s
eizu
res
Lack
of h
ope
in fi
ndin
g a
cure
Exis
tanc
e of
alte
rnat
ive
trea
tmen
ts
100
90
80
70
60
50
40
30
20
10
0% o
f R
esp
on
den
ts w
ho
str
on
gly
ag
ree t
hat
the f
ollo
win
g
asp
ect
s o
f ep
ilep
sy im
pact
th
eir
liv
es
the m
ost
Seizure Frequency: Daily/Weekly Monthly Yearly/Over a Year
SIDE-EFFECTS
MEDICATIONSLACK
ABLEWORK
FEAR HAVING
SEIZURES
KNOWINGCONTROLINABILITY
DOCTORS
ANXIETY
DAILY
YEARS IMPACT
SCHOOL
DAY
LIFE
FAMILY
UNPREDICTABILITY
SOCIAL
MEMORYLIVE
TAKE
BEING
DRIVINGPEOPLE
COGNITIVE
CARE
LOSSHAPPEN
INDEPENDENCE
TIME
OVER
“Frustration of trying different
medications and their side effects with no
improvement.”
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E P I L E P S Y. C O M
When asked to write down what frustrated individuals the most,
these were the most common words used:
100
90
80
70
60
50
40
30
20
10
0
% o
f R
esp
on
den
ts w
ho
str
on
gly
ag
ree t
hat
rese
arc
hers
sh
ou
ld b
e f
ocu
sin
g o
n t
he f
ollo
win
g
Cur
ing
epile
psy
Seiz
ure
them
omet
er
Kno
win
g w
hen
med
icin
es
can
be s
afel
y st
oppe
d
Stop
ping
sei
zure
s
Impr
ovin
g qu
ality
of l
ife
Impr
ovin
g m
atch
ing
of
trea
tmen
ts w
ith p
atie
nts
Impr
ovin
g ea
rly d
iagn
osis
Und
erst
andi
ng th
e ca
uses
and
mec
hani
sms
side
eff
ects
Redu
cing
med
icat
ion
unde
rlyin
g ca
uses
in th
e lo
ng-t
erm
Dev
elop
ing
gene
ther
apie
s to
trea
t
can
help
now
or i
n a
few
yea
rs
Find
ing
new
trea
tmen
ts th
at
Trea
ting
com
orbi
dite
s
Dev
elop
ing
devi
ces
to b
ette
r
pred
ict s
eizu
res
Dev
elop
ing
alte
rnat
e
trea
tmen
ts (e
.g.,
diet
)
Researchers should be focusing their efforts on:(Summary Broken Down by Seizure Frequency)
When respondents were asked to rank what researchers should focus on, stopping seizures and improving quality of life were the top choices.
CURE
SEIZURES
MEDICATIONSBEINGPEOPLE
FUNDING
WORKSIDE-EFFECTS
TREATMENTS
DOCTORS
LACK
RESEARCH
AWARENESS
TREATMENT
KNOWING
NOTHING
CONTROL
MEDICAL
LIFE
TAKE
DRUGS
CAUSENEW
FIND
MORE
ENOUGH
MANY
KNOW
SEEMS
CBD
HAVINGFEEL
TIME
HELP
YEARS
Seizure Frequency: Daily/Weekly Monthly Yearly/Over a Year
“There is too much time spent worrying about a cure. There can’t be a cure until
we know the reason.”