1. Expanding the Chain: The 7 th Link- Rehabilitation & Recovery Vince Mosesso, MD Professor of Emergency Medicine University of Pittsburgh School of Medicine

2. Disclosures  Prior grants from Medtronic Inc and Medtronic Foundation  Prior research support from Medtronic, Zoll, Philips, Heartsine, Cardiac Science, Welch-Allyn  Speaker honorarium from Biotronik  Research support from Zoll LifeCor Corporation  Medical director and co-founder, Sudden Cardiac Arrest Association Sudden Cardiac Arrest Association

3. When Survivors Speak, …

4. Post cardiac arrest syndrome Now recognized as specific condition with specific interventions

5. Post cardiac arrest syndrome  Post cardiac arrest brain injury  Post cardiac arrest myocardial dysfunction  Systemic ischemia & reperfusion response  Underlying condition that caused arrest

6. CNS  Loss of normal blood flow to brain  Overall blood flow/pressure control  Regional microvascular perfusion  Neuronal cell death (necrosis/homicide) and triggering of self-death pathways (apoptosis/suicide)  Clinical syndrome ranges from mild memory deficits to persistent vegetative state

7. Phases of post arrest care

8. After acute phase: Recovery & Rehabilitation  Less well understood  Most research has focused on severe neurological disabilities  Lack of providers to help survivors and love ones cope with emotional, psychological and more subtle cognitive changes

9. Symptoms and problems noted by survivors  Goes beyond typical organic dysfunction  Appears to be a unique spectrum of cognitive and emotional experiences  Many express need for support

10. Neuropsychological sequelae after cardiac arrest   155 survivors underwent neuro-psych evaluations at 3 and 12 months   Moderate to severe cognitive dysfunction:   60% at three months   48% at one year   Depression in 45% at one year Roine RO et al. JAMA. 1993.

11. Psychosocial distress after ICD implantation   57 subjects surveyed every 6 months for 2 years   Depression in 35%   Anxiety in 45%   Some decrease over time Thomas SA et al. Heart & Lung, 2009

12. 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

13. A snapshot of survey respondents 152 survivors responded. Age:56 years old (range 15-87) Male:65% Female:35% Caucasian: 95% Other ethnicity: 5%

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

15. 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”

16. 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.

17. 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?"

18. 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.

19. Were you involved in any cardiac rehabilitation after your arrest?

20. 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

21. What words could have helped you to heal?

22. Emotional changes  Lability (marked mood fluctuations)  Spontaneous or easily-triggered crying  Increased sensitivity to others’ losses  Greater love of family and friends  Fear—of ICD firing, or of not having one and needing it.  Guilt—why did I survive, when so many others die?

23. Cognitive  Various types and duration of memory loss  Dementia (post-anoxic)  Variable degrees of loss of executive function  Continuous barrage of thoughts  Quicker, smarter brain function

24. Sensory / Perception  “Size up” people more quickly/easily  Heightened sense of smell  Altered pain tolerance / perception

25. Behavioral  Sleep disturbances  More outspoken when believe right  More risk-taking  “Been to the brink, nothing can hurt me more.”

26. Psychiatric/psychological  Depression and/or apathy  Perception of infallibility  Perception of vulnerability  Belief in destiny—things are happening for a purpose  Sense of urgency—must do as much as possible right now

27. Family & Loved ones   Also affected in many ways and to various degrees   Both similar and different challenges   One study:   60% with psychosomatic complaints   50% noted lack of social support   Pusswald G et al. Resuscitation, 2000.

28. 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"

29. Dual causation   Organic brain injury   Psychological stress Treatment must address both of these causes and the various components

31. “Post cardiac arrest stress disorder (PCSD)” -?  Need to distinguish from PCAS  Need to distinguish from other stress type conditions?  Labeling facilitates:  increasing awareness  advocacy for more research and clinical therapy

32. PCSD Components  Cognitive  Emotional  Perceptual  Behavioral  Psychiatric/Psychological

33. Needed  Better understanding  Symptoms  Triggers  Spectrum of severity and scope  Better therapy  More access to therapy

34. Potential ways to address  Greater awareness of need  Research  Stakeholder forum  Meeting of experts to review current science and potential therapies  Professional education  Registry of qualified providers

35. The 7 th Link: Recovery & Rehabilitation Stay tuned to www.suddencardiacarrest.org for further information.

36. The Defibrillators: Side Effects