1. The 7 th Link: Rehabilitation and Recovery The 7 th Link: Rehabilitation and Recovery Carrie St. Thomas, M.S., MBA

2. Disclaimer Employee of Biotronik, USA Employee of Biotronik, USA Previous employee of Medtronic, Inc. Previous employee of Medtronic, Inc.

3. Objectives: What happens to a survivor post event? What happens to a survivor post event? How do we identify signs of emotional trauma, and see signs of impending psychological problems? How do we identify signs of emotional trauma, and see signs of impending psychological problems? How can we provide help or intervene to manage a survivor’s overall health? How can we provide help or intervene to manage a survivor’s overall health? What kind of support strategies are available? What kind of support strategies are available?

4. Post Event Adjustment period of 6-12 months Adjustment period of 6-12 months Involves development of coping skills Involves development of coping skills Survivors and families incorporate lifestyle changes Survivors and families incorporate lifestyle changes Common behaviors and feelings Common behaviors and feelings Denial of event/disease Denial of event/disease Returning to work/ADL concerns Returning to work/ADL concerns The need for emotional support The need for emotional support Seeking information about disease/health Seeking information about disease/health Fricchione, GL. Am Heart J 1989; 117:1411-1414

5. Physical Functioning 90% of SCA survivors were impaired in ADLs 90% of SCA survivors were impaired in ADLs 20% had mobility problems 20% had mobility problems 45% could not do vigorous activity 45% could not do vigorous activity 45% returned to sexual activity with reduced frequency 45% returned to sexual activity with reduced frequency The greater the physical impairments, the lower the quality of life, more psychological distress, more depression, and greater risk of CAD. The greater the physical impairments, the lower the quality of life, more psychological distress, more depression, and greater risk of CAD. Sauve, MJ. Heart Lung. 1995; 24:133-144

6. Returning to Work 15-75% of people return to work post SCA 15-75% of people return to work post SCA Those who do return retire in 6-12 months Those who do return retire in 6-12 months Those who do return with success have strong social networks at home Those who do return with success have strong social networks at home Most were married and had professional jobs Most were married and had professional jobs High levels of education High levels of education Better health history Better health history Kalbfleisch, KR. Am J Cardiol. 1989; 64:199-202

7. Neurological Changes Full neurologic recovery in SCA patients ranges from 12-70% Full neurologic recovery in SCA patients ranges from 12-70% With the high probability of neurological impairment, most do not receive neurological assessment pre-discharge With the high probability of neurological impairment, most do not receive neurological assessment pre-discharge Potential cognitive impairments Potential cognitive impairments May not be identified May not be identified Are minimized Are minimized Denied until work/family problems develop Denied until work/family problems develop Other neurological deficits include forgetfulness, comprehension issues, and lack of problem solving ability Other neurological deficits include forgetfulness, comprehension issues, and lack of problem solving ability Bainger, EM. Am J Cri Care. 1991; 4(1): 36-43

8. Psychological Adjustment SCA survivors are more depressed, fearful, irritable, helpless, unable to sleep, and feel less in control. SCA survivors are more depressed, fearful, irritable, helpless, unable to sleep, and feel less in control. Commonly diagnosed psychiatric disorders seen in 50% of SCA survivors include: Commonly diagnosed psychiatric disorders seen in 50% of SCA survivors include: Adjustment disorder Adjustment disorder Panic disorder Panic disorder Major depression Major depression Better psychological adjustment in survivors who are married and have strong familial support Better psychological adjustment in survivors who are married and have strong familial support Morris, PL. Psychosomatics. 1991; 32:58-64

9. Negative Emotions Negative emotions often follow SCA Negative emotions often follow SCA Patient may feel: Patient may feel: Depression Depression Anxiety Anxiety Anger Anger Fear Fear Denial/Isolation Denial/Isolation

10. Depression Obvious symptoms Obvious symptoms Depressed mood Depressed mood Crying spells Crying spells Loss of pleasure Loss of pleasure Struggle to control mood Struggle to control mood Hopelessness Hopelessness Self blame Self blame Feelings of being punished Feelings of being punished Withdrawal Withdrawal Thoughts of death Thoughts of death Subtle symptoms Sleep problems Poor concentration or memory Problems with decision-making Vague pain complaints Slowed coordination Low sexual interest Change in appetite Change in weight Conti, J.B., Cardiac Electrophysioogy Review Journal, 1999; Sears, S.F., Heart 2002

11. Anxiety Nearly 40% of patients experience symptoms of anxiety post SCA Nearly 40% of patients experience symptoms of anxiety post SCA This causes survivors to: This causes survivors to: Avoid doing activities they like Avoid doing activities they like Have recurrent fears, often times of event repeating Have recurrent fears, often times of event repeating Physiologic arousal (increased blood pressure, faster heart rates at rest) Physiologic arousal (increased blood pressure, faster heart rates at rest)

12. A Survivor’s Concerns: Can you help me deal with this any better? Can you help me deal with this any better? I know that my life was saved, but I still don’t feel comfortable. I’m worried about a lot of things. I know that my life was saved, but I still don’t feel comfortable. I’m worried about a lot of things. I keep thinking about what will happen if this occurs again. I keep thinking about what will happen if this occurs again. As if life weren’t stressful enough, now I have to deal with my heart condition. As if life weren’t stressful enough, now I have to deal with my heart condition. I just want to be able to start driving again. I just want to be able to start driving again. I’m too young to have this happen to me! I’m too young to have this happen to me!

13. A Family’s Concerns: Since he/she had a SCA, I’m afraid to get him upset. Since he/she had a SCA, I’m afraid to get him upset. I miss our sex life, when can we be close again? I miss our sex life, when can we be close again? I worry when he/she drives. I worry when he/she drives. We don’t enjoy things like we used to. We don’t enjoy things like we used to.

14. Families Under Stress Support persons, usually spouses, are at risk for psychosocial problems Support persons, usually spouses, are at risk for psychosocial problems Top eight patient issues that affect support persons: Top eight patient issues that affect support persons: Worry Worry Financial worries Financial worries Fear of physical exertion Fear of physical exertion Difficulty relaxing Difficulty relaxing Depression Depression Managing stress Managing stress Sexual issues Sexual issues Returning to work Returning to work

15. Intervention Programs These programs for recovery should entail These programs for recovery should entail A focus on the survivor and their family A focus on the survivor and their family Be implemented early post event Be implemented early post event Address stress reduction options and methods for coping Address stress reduction options and methods for coping Provide additional resources such as support groups or online chat groups Provide additional resources such as support groups or online chat groups Provide strategies for adaptation to every day life Provide strategies for adaptation to every day life

16. Psychological Interventions Education and Support Education and Support Restore sense of control Restore sense of control Encourage predictability Encourage predictability Manage family emotional changes Manage family emotional changes Communication Communication Enhance communication among loved ones Enhance communication among loved ones Sharing distress can lead to positive outcomes Sharing distress can lead to positive outcomes Openly face anxiety Openly face anxiety

17. Family Support Strive for positive family adjustment Strive for positive family adjustment Use teamwork Use teamwork Use coping mechanisms Use coping mechanisms Express feelings Express feelings Enjoy relationships Enjoy relationships Encourage family to learn more about your disease Encourage family to learn more about your disease Survivors and families may want to learn CPR Survivors and families may want to learn CPR

18. Support Strategies Ask for general information and reassurance about depression Ask for general information and reassurance about depression Openly express your emotions Openly express your emotions Take part in daily behaviors that: Take part in daily behaviors that: – Foster a sense of accomplishment – Involve fulfilling obligations – Are purely for pleasure If needed, talk to your physician about medications If needed, talk to your physician about medications

19. Positive Attitudes and Confidence are Important Recognize and control stress Recognize and control stress Develop realistic and hopeful attitudes Develop realistic and hopeful attitudes Gain confidence in ability to accomplish certain tasks Gain confidence in ability to accomplish certain tasks Evaluate the events of life, focusing on the positive Evaluate the events of life, focusing on the positive Seek strength in others, and yourself Seek strength in others, and yourself We want survivors to:

20. Health Care Providers We know that patients need and expect help and guidance from health care providers in order to return to pre-event levels of functioning We know that patients need and expect help and guidance from health care providers in order to return to pre-event levels of functioning Care providers should be aware of potential impairment in cognitive abilities Care providers should be aware of potential impairment in cognitive abilities Educate, share, and provide support Educate, share, and provide support Know available support groups, SCAA chapters, etc Know available support groups, SCAA chapters, etc

21. Questions to Answer How do we increase health care provider understanding of the challenges behind surviving SCA? How do we increase health care provider understanding of the challenges behind surviving SCA? How do we support SCA rescuers? How do we support SCA rescuers? What other resources can be made available to help survivors and families? What other resources can be made available to help survivors and families? What about an ICD? What about an ICD?