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The Psychology of the ICD Patient

The Psychology of the ICD Patient.

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The Psychology of the ICD Patient

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  1. The Psychology of the ICD Patient This presentation is provided for general educational purposes only and should not be considered the exclusive source for this type of information. At all times, it is the professional responsibility of the practitioner to exercise independent clinical judgment in a particular situation.

  2. Objectives Describe relevant psychological research Identify patients at risk for potential stress Promote the ICD as a positive step towards a healthier, safer lifestyle Provide patients with coping strategies, such as shock plans Discuss benefits of reducing inappropriate shocks Improve patient education procedures Address possible family struggles Explore relevant clinical research data

  3. ICD Patient Circle of Influence Family & Friends Health Professionals Device Company Personnel Patient

  4. You Make a Difference! Patient education and understanding Patient coping mechanisms and perceptions of control Patient shock plans/programming Increased well-being and reduced medical care • (Sotile W, Psychosocial Interventions for Cardiopulmonary Patients, Champaign: Human Kinetics, 1996) • (Golin CE et al. Journal of Acquired Immune Deficiency Syndrome, 2006 May; 42(1): 42-51) • (Sears SF, Shea JB, Conti JB. How to respond to an implantable cardioverter defibrillator shockCirculation, June 14, 2005; 111(23): e380-e382)

  5. ↑ well-being measures ↓ hospitalizations ↓ outpatient consultations ↑ medial adherence Psychosocial Interventions • (Sotile W, Psychosocial Interventions for Cardiopulmonary Patients, Champaign: Human Kinetics, 1996) • (Golin et al. Journal of Acquired Immune Deficiency Syndrome, 2006 May; 42(1): 42-51)

  6. What is the main adjustment issue you have observed among ICD patients? Reflection • Body image concerns • Concern about shock • Concern about possible device malfunction • Coping with family concerns about the device

  7. 450 ICD pts. (82% male; mean age = 65 yrs.) 395 significant others (85% female) 103 MD’s 157 RN’s & PA’s Quality of Life U.S. National Survey of ICD Recipients • (Sears SF, Todaro JF, Lewis TS, Sotile WM & Conti JB, Clinical Cardiology, 1999; 22: 481-489)

  8. Good to excellent general health 71% Same or better quality of life 91% Same or better family functioning 98% Same or better emotional well-being 85% Life After ICD: Patient Ratings • (Sears SF, Todaro JF, Lewis TS, Sotile WM & Conti JB, Clinical Cardiology, 1999; 22: 481-489)

  9. Anxiety (13-38%) Depression (24-33%) Living with an ICD: What are Possible Negatives? • (Sears SF, Todaro JF, Lewis TS, Sotile WM & Conti JB, Clinical Cardiology, 1999; 22: 481-489) • (Sears SF & Conti JB. Quality of life and psychological functioning of ICD patients. Heart 2002; 87: 488-493) • (Burke JL, Hallas CN, Clark-Carter D, White D & Connelly D, British Journal of Health Psychology, 2003; 8 (Pt 2): 165-178) • (Bilge AK, Ozben B, Demircan S, Cinar M, Yilmaz E, Adalet K, PACE, 2006; 29: 619-626)

  10. Quality of Life – CIDS Study AmiodaroneICD (n = 160)(n = 157) QOL > for ICD pts. Except if ≥ 5 shocks • (Steinberg JS, et al. The AVID Investigators. Antiarrhythmic drug use in the implantable defibrillator arm of the Antiarrhythmics vs Implantable Defibrillators (AVID) Study, JACC, Feb 1998; 31(Supp 2): 514A.) • (Irvine J et al. Quality of life in the Canadian Implantable Defibrillator Study, American Heart Journal, 2002; 144(2): 282-289)

  11. Predictive value of preexisting psychological variables Pessimism Anxious personality Other factors Disease progression post-implant Symptomatic HF Primary vs. Secondary indication Research Review • (Bostwick JM & Sola CL, An updated review of implantable cardioverter/defibrillators, induced anxiety, and quality of life. Psychiatric Clinics of North America, Dec 2007; 30(4): 677-688) • (Pedersen SS, van Domburg RT, Theuns DA, Jordaens L, Erdman RA., Concerns about the implantable cardioverter defibrillator: A determinant of anxiety and depressive symptoms independent of experienced shocks. American Heart Journal, 2005; 149: 664-669) • (Pedersen SS, van Domburg RT, Theuns DA, Jordaens L, Erdman RA: Type D personality is associated with increased anxiety and depressive symptoms in patients with an implantable cardioverter defibrillator and their partners. Psychosomatic Medicine, 2004; 66: 714-719)

  12. Young (<50 years) Female Premorbid psychological stress Type D Personality Most at Risk for Potential Stress • (Sears SF & Conti JB, Quality of life and psychological functioning of ICD patients. Heart 2002; 87: 488-493) • (Denollet J, DS14: standard assessment of negative affectivity, social inhibition, and Type D personality. PsychosomaticMedicine, Jan-Feb 2005; 67(1): 89-97) • (Pedersen SS, Holkamp PG, Caliskan K, van Domburg RT et al., Type D personality is associated with impaired health-related quality of life 7 years following heart transplantation. Journal of Psychosomatic Research, Dec 2006; 61(6): 791-795) • (Van den Broek KC, Nyklicek I, van der Voort PH, Alings M, Meijer A, Denollet J, Risk of ventricular arrhythmia after implantable defibrillator therapy in anxious type D patients. JACC, Aug 2009; 54(6): 531-537)

  13. Combination of two traits: 1. Negative affectivity – “gloomy” view across time and situations 2. Social inhibition – contains emotions due to concern about how others will react Associated with arrhythmia, mortality, and psychological stress Type D Personality • (Denollet J, DS14: standard assessment of negative affectivity, social inhibition, and Type D personality. PsychosomaticMedicine, Jan-Feb 2005; 67(1): 89-97) • (Pedersen SS, Holkamp PG, Caliskan K, van Domburg RT et al., Type D personality is associated with impaired health-related quality of life 7 years following heart transplantation. Journal of Psychosomatic Research, Dec 2006; 61(6): 791-795) • (Van den Broek KC, Nyklicek I, van der Voort PH, Alings M, Meijer A, Denollet J, Risk of ventricular arrhythmia after implantable defibrillator therapy in anxious type D patients. JACC, Aug 2009; 54(6): 531-537)

  14. The Type D Scale (DS14) 2 scales of 7 items each Measures negative affectivity (i.e., “I often feel unhappy”) Measures social inhibition (i.e., “I am a closed kind of person”) Score > 10 on both subscales = Type D Type D Personality • (Denollet J, DS14: standard assessment of negative affectivity, social inhibition, and Type D personality. PsychosomaticMedicine, Jan-Feb 2005; 67(1): 89-97) • (Pedersen SS, Holkamp PG, Caliskan K, van Domburg RT et al., Type D personality is associated with impaired health-related quality of life 7 years following heart transplantation. Journal of Psychosomatic Research, Dec 2006; 61(6): 791-795) • (Van den Broek KC, Nyklicek I, van der Voort PH, Alings M, Meijer A, Denollet J, Risk of ventricular arrhythmia after implantable defibrillator therapy in anxious type D patients. JACC, Aug 2009; 54(6): 531-537)

  15. Poor understanding of device, disease Medical co-morbidities Prior shocks Most at Risk for Potential Stress • (Sears SF & Conti JB, Quality of life and psychological functioning of ICD patients. Heart 2002; 87: 488-493)

  16. Evidence Driving Shock Reduction For patients, the fear of shocks can be disruptive to a normal active life Shock reduction has been shown to improve ICD patient quality of lifeand, in the process, may reduce a patient’s fear of getting shocked Post-shock care can tie up valuable clinic time and can also generate unnecessary calls for emergency vehicles and ER, hospital, and clinic visits • (Irvine J et al. Quality of life in the Canadian Implantable Defibrillator Study, American Heart Journal, 2002; 144(2): 282-289) • (Sears SF & Conti JB, Understanding implantable cardioverter defibrillator shocks and storms: medical and psychosocial considerations for research and clinical care. Clinical Cardiology, March 2003; 26(3): 107-111) • (Ahmad M, Bloomstein L, Roelke M, Bernstein AD & Parsonnet V, Patients’ attitudes toward implanted defibrillator shocks. PACE, 2000;23:934-938) • (Wathen MS, et al. Circulation. 2004;110(17):2591-2596)

  17. Perception of Shock Perception of shock is very important!

  18. Phantom Shock Phantom Shock Manifestation of patient’s heightened body awareness and anxiety Do not dismiss based on device data • (Prudente LA, Reigle J, Bourguignon C, Haines DE, DiMarco JP, Psychological indices and phantom shocks in patients with ICD. Journal of Interventional Cardiac Electrophysiology, April 2006; 15(3): 185-190) • (Prudente LA, Psychological disturbances, adjustment, and the development of phantom shocks in patients with implantable cardioverter defibrillator. Journal of Cardiovascular Nursing, Jul-Aug 2005; 20(4): 288-293)

  19. Encourage Paradigm Shifts You cannot control the event; learn to control your reactions.

  20. What to do, who to call, after hours phone numbers Families/caregivers should have this info plus copy of device ID card and medication list Encourage Shock Plans • (Sotile WM & Sears SF, You Can Make A Difference: Brief Psychosocial Interventions for ICD Patients and Their Families, Minneapolis, Minn: Medtronic, 1999) • (Trupp R. In-booth presentation; Heart Failure Society of America, 2008) • (Sears SF, Shea JB, Conti JB, How to respond to an implantable cardioverter defibrillator shock. Circulation, June 14, 2005; 111(23): e380-e382)

  21. How Will You Make a Difference? What new steps can you take to help patients with adjustment issues? What one step can you take immediately?

  22. Patient Education

  23. Key Education Points Clearly explain the patient’s risk of SCA without an ICD Clarify the patient’s understanding of their device indication, the implant surgery, and the device function Emphasize that ICDs may be programmed for painless therapy first Normalize feelings of anxiety and depression that patients may experience Emphasize that most patients report good QoL after implant • (Gehi, Mehta & Gomes. JAMA Dec 20 2006; • 296(23): 2839-2847) • (Kapa et al. PACE 2010) • (Sears, Matchett & Conti. Journal of • Cardiovascular Electrophysiology 2009; vol. 1-8)

  24. Incision/site discomfort Sleep disturbances Driving Shocks Return to activities Potential ICD Adjustment Issues • (Dunbar SB, Jenkins LS, Hawthorne, M, et al. Heart & Lung 1999:28: 303-315) • (Dougherty CM. American Journal of Critical Care 1994; 3: 145-154) • (Carroll DL, Hamilton GA. Heart & Lung 2005; 34: 169-178) • (Kuhl EA, Dixit NK, Walker RL, Conti JB, Sears SF. PACE 2006; 29: 614-618)

  25. Explanation of device indication Expectations for implant Instructions for living with an ICD Information about ICD function Pre-Implant Education • (Doughtery CM, Pyper GP, Frasz HA. Heart Lung 2004; 33: 183-190) • (Sears SF, Kovacs AH, Conti JB, Handberg E. Journal of Cardiopulmonary Rehabilitation 2004; 24: 209-215) • (Sotile WM, Sears SF. You Can Make a Difference: Brief Psychosocial Interventions for ICD Patients and • Their Families. Minneapolis, MN, Medtronic, Inc. 1999)

  26. Accurate Patient Expectations Accurate expectations Less depression and anxiety Less healthcare utilization Better device acceptance (Sears et al., 2004) • (Dunbar SB, Langberg JJ, Reilly CM et al. PACE (Oct 2009); 32: 1259-1271) • (Lewin R, Coulton S, Frizelle DJ et al. Heart 2009; 95(1): 63-69) • (Kohn CS, Petrucci RJ, Baessler C et al. PACE 2000; 23(4 Pt 1): 450-456) • (Sears SF, Serber ER, Lewis TS et al. Journal of Cardiopulmonary Rehab 2004; 24: 324-331)

  27. Education Preferences Visual – brochures, heart and device images, anatomy posters, videos Auditory – explanations, patient success stories Kinesthetic- “hands on” to touch and feel a heart model, demo devices • (James, W., Galbraith, M. W. Perceptual Learning Styles: Implications and Techniques for the Practitioner. Lifelong Learning, (January 1985) 20-23)

  28. Personality Types Give me … facts, details, evidence multiple options and pros/cons examples and stories professional opinions empathy and reassurance • (Keirsey, D., Bates, M. Please Understand Me: Character & Temperament Types. Gnosology Books Ltd., Fourth edition (1984) 13-26)

  29. When patients can choose method of support/education: ↑ satisfaction ↓ distress ↓ health care utilization (Serber et al., 2009, PACE, 32: 383-390) (Lewin R, Coulton S, Frizelle DJ et al. Heart 2009; 95(1): 63-69) Education

  30. How Will You Make a Difference? In your experience, what is the most challenging aspect of patient education? What new steps can you take to help educate patients and normalize their concerns? What one step can you take immediately? Barker, Joel. The Star Thrower Story, DVD Format, Item #DTF05S01, Star Thrower Distribution, Inc., St. Paul, MN. www.starthrowerstory.com.

  31. Family Stress and Support Resources

  32. The Big 5 • Similar % among caregivers!! • RISK: • Increased odds of marital and family tensions (Williams, R. & Williams, V. Lifeskills (1997)) (Shanefield, SB. Psychosomatics 31 (1990): 138-145) (Cohen, D. Medical Clinics of North America 78 (1994): 795-809) (Dickerson, S. Clinical Nursing Research 7, no.1 (1998)) • THE BIG 5 • Chronic Worry • Depression • Anger/Hostility • Isolation • Conflict

  33. Obvious Symptoms Depressed mood Crying spells Loss of pleasure Struggle to control mood Hopelessness Self blame Feelings of being punished Withdrawal 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 Depression • (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (2000))

  34. Families are teams → stress affects everyone→ all are vulnerable to worry and struggle Family members may have more concern than patients Family members may feel they lack information and attention When heart disease strikes… • (Sotile, WM Thriving With Heart Disease (2003)) • (Moser, DK, Dracup, K , Marsden, C. International Journal of Nursing Studies 30 (1993): 105-114)

  35. Families Under Stress • Patient recovers, mate does not…Why? • Observer: patient is helpless, in hospital, perhaps close to death • After effects: sleepless, worried, replaying past events, worrying about future events • (Shanefield, SB. Psychosomatics 31(1990): 138-145) • (Dickerson, S. Clinical Nursing Research 7, no. 1 (1998): 6-24) • (Sotile, WM. Thriving With Heart Disease (2003)) • (O’Farrell, J. et al., Heart & Lung 29, no.2 (March-April 2000): 97-104) • (Arefjord, K. et al. Psychological Reports 83, no.3, Pt. 2 (December 1998): 1203-1216)

  36. Shocks & Stress • (Dunbar et al., Depression and Anxiety, 1999) • (Gibelli et al., PACE, 2008) • (Kop et al, Circulation, 2004) • (Lampert et al, Circulation, 2002) • (Narayan, JACC, 2006)

  37. Stress and Arrhythmia • Microvolt T-wave Alternans (MTWA) • Correlated with ventricular arrhythmias • Shown to increase during exercise and mental stress/anger • Mood states such as anxiety and depression may trigger arrhythmias • (Dunbar et al., Depression and Anxiety, 1999) • (Gibelli et al., PACE, 2008) • (Kop et al, Circulation, 2004) • (Lampert et al, Circulation, 2002) • (Narayan, JACC, 2006)

  38. Stress and Arrhythmia • Anger-induced TWA predicts future ventricular arrhythmias in ICD patients (1 year follow-up and beyond) • Stress and sudden death linked by emotion-induced repolarization instability • (Lampert, Shusterman, Burg et al., JACC 2009)

  39. The Stress Response 150 130 110 90 70 50 40 30 20 10 0 Stressed  Calming Stress Level Arousal  0 A B C D E E Time • (Sotile, WM. Thriving With Heart Disease (2003))

  40. The Stress Response LDL HDL Ischemia, SCD, MI Arrhythmias  Immune System • THE BIG 5 • Chronic Worry • Depression • Anger/Hostility • Isolation • Conflict 150 130 110 90 70 50 40 30 20 10 0 Stress Level STRAINED 0 A B C D E F • (Williams, R & Williams, V. Lifeskills (1997)) • (Sotile, WM. Thriving With Heart Disease (2003)) • (Tofler, GH et al. JACC 66 (1990): 22-27) • (Kawachi, D. et al. Circulation 90 (1994): 2225-2229) • (Kop, WJ. Psychosomatic Medicine 61, no. 4 (July-Aug 1999): 476-487) Time

  41. Reflection • How often do you encounter ICD patients with mild to moderate depression or anxiety? Severe? • (Bostwick & Sola, The Psychiatric Clinics of North America, 2007)

  42. Stress Management • (Pedersen, van den Broek, and Sears, PACE (30), 2007))

  43. Stress Management • Combination of Cognitive Behavioral Therapy (CBT) and Exercise Training may be most beneficial at reducing anxiety and increasing exercise capacity • Cognitive Behavioral Therapy (CBT) • Focuses on reframing negative thoughts about ICD shocks • Confronts ICD-related fears and avoidance behaviors • (Pedersen, van den Broek, and Sears, PACE 30 (2007))

  44. Stress Management • Screen/refer patients with poor QoL and psychological distress • Address avoidance behaviors (with or without shock history) • Make exercise and QoL recommendations • Address critical events effectively • Refer to support groups

  45. Reflection • Are you aware of ICD support groups in your area? • Have you referred patients and caregivers to support groups in the past? • What do you feel are the main ways in which support groups benefit patients and their families?

  46. Support Groups • 96% patients and caregivers find support groups “very helpful” • Reduced: stress, anxiety, hostility, anger • Increased: adjustment, happiness, sociability, return to work • (Heller et al., PACE (1998)) • (Wallace et al., Journal of Cardiopulmonary Rehabilitation (2002))

  47. Support Group Benefits • Benefits to patient and caregiver: • Hearing and telling stories • Fears of shock normalized • Meaningful information about ADL’s, do’s and don’ts • Group camaraderie, therapeutic friendship • Questions answered by facilitator • Technical information (Dickerson, Posluszny & Kennedy, Heart and Lung, (2000))

  48. Support Group Benefits • Overall Theme = People coping with mortality • Most prominent right after SCD survival or shock • Group environment of sharing stories and getting information is cathartic (Dickerson, Posluszny & Kennedy, Heart and Lung, (2000))

  49. How can you be on guard for signs of patient or family distress? What new steps might you take to encourage stress management and support families? What one step can you take immediately? How Will You Make a Difference?

  50. Shock Reduction

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