1. SCAA: survey of survivors and their loved ones Benjamin S. Abella, MD, MPhil Clinical Research Director Center for Resuscitation Science Department of Emergency Medicine University of Pennsylvania SCAA Annual Meeting - October, 2008 CRS Center for Resuscitation Science

2. SCAA: a membership survey Goal to learn about members: Who are you? What happened to you? What has changed? What would you share with others? Spouses perspectives

3. A snapshot of survey respondents 152 of you responded. You are: 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? <’03 ’03 ‘04 ‘05 ‘06 ‘07 ’08 Year 50 40 30 20 10 0 First event: Most recent event: 1973 Aug 2008 Number responding

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

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

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

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

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

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? Exercise Driving Air travel Being alone Other 60 40 20 0 Number responding 23% 15% 30% 37% 5% “holding loved ones” “swimming” “sleeping”

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

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