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Experiences of cardiac arrestsurvivors and families: a survey
Benjamin S. Abella, MD, MPhil
Clinical Research Director Center for Resuscitation Science
Department of Emergency Medicine University of Pennsylvania
ECCU workshop – December, 2010
CRSCenter for
Resuscitation Science
SCAA: a membership survey
Survey performed amongSCAA membership
Results presented at American HeartAssociation annual meeting in 2009
A snapshot of survey respondents
Overview of responses (n=152):
Age: 56 years oldrange 15-87
Male: 65%Female: 35%
Caucasian: 95%Other ethnicity: 5%
When and where did it happen
When did you experience SCA?
<’03 ’03 ‘04 ‘05 ‘06 ‘07 ’08 Year
50
40
30
20
10
0
First event:Most recent event:
1973Aug 2008
Num
be
r re
spo
ndin
g
When and where did it happen
Where did you experience SCA?
gym work home other
80
60
40
20
0Num
be
r re
spo
ndin
g
28%
Who rescued you with CPR?
EMT
Byst
and
er
fam
ily
unkn
ow
n
no C
PR
oth
er
80
60
40
20
0Num
be
r re
spo
ndin
g
12%
18%12%
37%
18%
3%
“physician atgolf course”
What was used to save your life?
De
fib/
AED
CPR
Oth
er
unkn
ow
n
80
60
40
20
0Num
be
r re
spo
ndin
g
79%
65%
17%3%
ICDs
Was your SCA from a genetic condition?
Yes16%
No56%
unknown 29%
Long QT syndromeHypertrophic cardiomyopathy
Wolf-Parkinson-White syndrome
What helpful information did you receive?
that I should take every day one day at a time andappreciate life because I received a gift
The doctors could not fully empathize, so the SuddenCardiac Arrest Association web page was very helpful.Especially to know that there were others like me.
Attending cardiac rehab, CORE clinic at MN HeartClinic was exceptional, support group info
Emotional support should be mandatory, doctors aregreat with the medical questions but not with theemotional aspect of ICD shock
After SCA, what activity did you fear?
Exe
rcis
e
Driv
ing
Air
tra
vel
Bein
g a
lone
Oth
er
60
40
20
0
Num
be
r re
spo
ndin
g
23%
15%30%
37%
5%
“holding loved ones”“swimming”“sleeping”
After SCA, what function has changed?
Touc
h
Tast
e
Sme
ll
Sig
ht
He
arin
g
Me
mo
ry
Co
ord
ina
tion
No
ne
Oth
er
80
60
40
20
0Num
be
r re
spo
ndin
g 53%
What was told to you that was helpful?
That I was one of the 5% that survives and I wasincredibly fortunate.
That everyday is a new day to enjoy with your family andfriends, and I do just that!
It's o.k. to be scared. You need to talk about yourfears.Emotional support from my wife during thatdifficult first year even though it was probably moredifficult for her.
What was told to you that was annoying?
you are so lucky to be here;... you are here to dosomething special for the world: Did you see the light??
people do not know the difference between heart attackand arrest
After seeing my ICD, "That's gross!"
"So, you must have been pretty un-healthy before,huh?"
What was hardest to deal with after SCA?
Post-traumatic stress syndrome that occurred after mydefibrillator fired 10 months after implantation.
Spouse. She never recognized that I went throughsomething major. Getting divorced next month.
Three things--the huge bills, that I needed to handlestress and I couldn't drive for a month
Total loss of memory & concentration. Not drivingfor 6 months.
Spouses: what was hardest?
Constant worry that she will lose consciousness again ata time when it will endanger her life.
Now that we have become very active in this "mission" werealize that many more SCA patients could be SAVED .The genral public just does not know enough about thismajor health issue !
That her SCA could be genetic. She is protected bya ICD, but we don't know whether my 3 daughtersmay have the same genetic mutation, if that's what itis.having to listen to "why did this happen to me andwhy did I survive"
What is the most important task for SCAA?
Educ
atio
n
Sup
po
rt
Pro
mo
te A
ED
Pro
vid
e h
op
e
Tea
ch
CPR
Reso
urc
e
Rese
arc
h
80
60
40
20
0Num
be
r re
spo
ndin
g
49%
25%
10%
Advancing education: CPR in Philadelphia
How to address low ratesof bystander CPR?
“Lead by example”
Train the mayor, city council, city hall staff
Have city hall put CPR training on the map
Advancing education: CPR in Philadelphia
PFD as an active partner inCPR training
“Fire Ops 101” – PFDprogram introduced MayorNutter to CPR Anytime
The next success story?
Why stop with the mayor of Philadelphia?
Vision: national leaders performing CPR,championing a national CPR training day
Seeking out champions
Bill Clinton: coronary disease,quadruple bypass surgery
Dick Cheney: four heart attacks,arrythmia, internal defibrillatorrecipient