Experiences of Cardiac Arrest Survivors and Families: A Survey

1. Experiences of cardiac arrest
survivors and families: a survey
Benjamin S. Abella, MD, MPhil
CRS
Clinical Research Director
Center for Resuscitation Science
Center for Department of Emergency Medicine
Resuscitation Science University of Pennsylvania
ECCU workshop – December, 2010

2. SCAA: a membership survey
Survey performed among
SCAA membership
Results presented at American Heart
Association annual meeting in 2009

3. A snapshot of survey respondents
Overview of responses (n=152):
Age: 56 years old
range 15-87
Male: 65%
Female: 35%
Caucasian: 95%
Other ethnicity: 5%

4. When and where did it happen
When did you experience SCA?
50
First event: 1973
Number responding
40 Most recent event: Aug 2008
30
20
10
0
<’03 ’03 ‘04 ‘05 ‘06 ‘07 ’08
Year

5. When and where did it happen
Where did you experience SCA?
80
Number responding
60
28%
40
20
0
gym work home other

6. Spouses: were you present during SCA?
Yes
43%
No
57%

7. Who rescued you with CPR?
37%
“physician at
80 golf course”
Number responding
60
18% 18%
40 12% 12%
20
3%
0
Bystander
unknown
no CPR
other
EMT
family

8. What was used to save your life?
79%
65%
80
Number responding
60 ICDs
40
17%
20
3%
0
unknown
Defib/
AED
CPR
Other

9. Was your SCA from a genetic condition?
Long QT syndrome
Hypertrophic cardiomyopathy
Wolf-Parkinson-White syndrome
Yes
16%
unknown
29%
No
56%

10. What helpful information did you receive?
that I should take every day one day at a time and
appreciate life because I received a gift
The doctors could not fully empathize, so the Sudden
Cardiac Arrest Association web page was very helpful.
Especially to know that there were others like me.
Attending cardiac rehab, CORE clinic at MN Heart
Clinic was exceptional, support group info
Emotional support should be mandatory, doctors are
great with the medical questions but not with the
emotional aspect of ICD shock

11. After SCA, what activity did you fear?
60 “holding loved ones” 37%
“swimming”
“sleeping”
Number responding
40
23%
30%
15%
20
5%
0
Exercise
Being
Driving
alone
Other
Air travel

12. Number responding
0
20
40
60
80
Touch
Taste
Smell
53%
Sight
Hearing
Memory
Coordination
None
Other
After SCA, what function has changed?

13. What was told to you that was helpful?
That I was one of the 5% that survives and I was
incredibly fortunate.
That everyday is a new day to enjoy with your family and
friends, and I do just that!
It's o.k. to be scared. You need to talk about your
fears.
Emotional support from my wife during that
difficult first year even though it was probably more
difficult for her.

14. What was told to you that was annoying?
you are so lucky to be here;... you are here to do
something special for the world: Did you see the light??
people do not know the difference between heart attack
and arrest
After seeing my ICD, "That's gross!"
"So, you must have been pretty un-healthy before,
huh?"

15. What was hardest to deal with after SCA?
Post-traumatic stress syndrome that occurred after my
defibrillator fired 10 months after implantation.
Spouse. She never recognized that I went through
something major. Getting divorced next month.
Three things--the huge bills, that I needed to handle
stress and I couldn't drive for a month
Total loss of memory & concentration. Not driving
for 6 months.

16. Spouses: what was hardest?
Constant worry that she will lose consciousness again at
a time when it will endanger her life.
Now that we have become very active in this "mission" we
realize that many more SCA patients could be SAVED .
The genral public just does not know enough about this
major health issue !
That her SCA could be genetic. She is protected by
a ICD, but we don't know whether my 3 daughters
may have the same genetic mutation, if that's what it
is.
having to listen to "why did this happen to me and
why did I survive"

17. Number responding
0
20
40
60
80
Education
49%
Support 25%
Promote AED 10%
Provide hope
Teach CPR
Resource
Research
What is the most important task for SCAA?

18. Advancing education: CPR in Philadelphia
How to address low rates
of bystander CPR?
“Lead by example”
Train the mayor, city
council, city hall staff
Have city hall put CPR
training on the map

19. Advancing education: CPR in Philadelphia
PFD as an active partner in
CPR training
“Fire Ops 101” – PFD
program introduced Mayor
Nutter to CPR Anytime

20. CPR in Philadelphia
Councilwoman Donna Reed Miller
City proclamation
June 18 is “CPR Training day”

21. CPR in Philadelphia
City Council being trained

22. CPR in Philadelphia
City Hall staff trained
in all-day program

23. CPR in Philadelphia
The partnership

24. The next success story?
Why stop with the mayor of Philadelphia?
Vision: national leaders performing CPR,
championing a national CPR training day

25. Seeking out champions
Bill Clinton: coronary disease,
quadruple bypass surgery
Dick Cheney: four heart attacks,
arrythmia, internal defibrillator
recipient

26. … but you have to start somewhere
FOR CPR & AEDS!