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%

Spouses: were you present during SCA?

Yes43%

No57%

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

CPR in Philadelphia

City proclamationJune 18 is “CPR Training day”

Councilwoman Donna Reed Miller

CPR in Philadelphia

City Council being trained

City Hall staff trained in all-day program

CPR in Philadelphia

The partnership

CPR in Philadelphia

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

… but you have to start somewhere

FOR CPR & AEDS!FOR CPR & AEDS!