Experiences of cardiac arrestsurvivors and families: a surveyBenjamin S. Abella, MD, MPhil CRS Clinical Research Director Center for Resuscitation Science Center for Department of Emergency Medicine Resuscitation Science University of PennsylvaniaECCU workshop – December, 2010
SCAA: a membership surveySurvey performed amongSCAA membershipResults presented at American HeartAssociation annual meeting in 2009
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%
When and where did it happen When did you experience SCA? 50 First event: 1973Number responding 40 Most recent event: Aug 2008 30 20 10 0 <’03 ’03 ‘04 ‘05 ‘06 ‘07 ’08 Year
When and where did it happen Where did you experience SCA? 80Number responding 60 28% 40 20 0 gym work home other
Spouses: were you present during SCA? Yes 43% No 57%
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
What was used to save your life? 79% 65% 80Number responding 60 ICDs 40 17% 20 3% 0 unknown Defib/ AED CPR Other
Was your SCA from a genetic condition? Long QT syndrome Hypertrophic cardiomyopathy Wolf-Parkinson-White syndrome Yes 16% unknown 29% No 56%
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
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
Number responding 0 20 40 60 80 Touch Taste Smell 53% Sight Hearing MemoryCoordination None Other After SCA, what function has changed?
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! Its 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.
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, "Thats 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 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 couldnt drive for a month Total loss of memory & concentration. Not driving for 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 dont know whether my 3 daughtersmay have the same genetic mutation, if thats what itis.having to listen to "why did this happen to me andwhy did I survive"
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?
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
Advancing education: CPR in Philadelphia PFD as an active partner in CPR training “Fire Ops 101” – PFD program introduced Mayor Nutter to CPR Anytime
CPR in Philadelphia Councilwoman Donna Reed Miller City proclamation June 18 is “CPR Training day”
CPR in Philadelphia City Council being trained
CPR in Philadelphia City Hall staff trained in all-day program