Psychosocial Issues In Bone Marrrow Transplant

1. Psychosocial Issues In Bone Marrrow Transplant Jennifer Blosser, LCSW, ACSW, C-SWHC & Susan Striano, MSW November 2011

2. Objectives • Identify Biopsychosocial and Spiritual issues in BMT • Understand patient and caregiver issues • Identify resources and strategies to assist • Identify components of a patient evaluation that elicits important factors predictive of coping (2011) Blosser, Jennifer

3. Bio-psychosocial? • The biological, psychological and social affect a person’s response to illness and treatment • The mind and body connection • Health care staff need to address the person holistically • Contrasts with a reductionist model of disease (2011) Blosser, Jennifer

4. Family Work Health Spirituality Genetics Life Experience Resilience Temperment Constellation (2011) Blosser, Jennifer

5. Who Cares? • BMT is extremely rigorous • Long recovery times • Side effects • Late effects/Survivorship • High risks of mortality (2011) Blosser, Jennifer

6. Practical Matters • Patient and caregiver may relocate • Need plans for home and family • May be out of work • Resources stretched thin • Patient pay amounts • Gas mileage • Dreaded doughnut hole (2011) Blosser, Jennifer

7. Spiritual • Chronic sorrow (Olshansky, 1962) • Role loss • Facing mortality • Wearing out the system • Sin and Salvation • Search for meaning (2011) Blosser, Jennifer

8. Mental/Emotional • Anxiety and Depression • Denial/Minimization • Anger • Fears of the unknown • Loss of control • Dependence • Deterioration • Side effects/Pain/Suffering • Reaction of others • Fear of relapse • ENGULFMENT (2011) Blosser, Jennifer

9. Physical • Fatigue/sleep disturbance • Sexual dysfunction • Side effects of medicine • Side effects of GVHD • Where is my wellness • Cognitive changes (2011) Blosser, Jennifer

10. Young Adults • Ill at transitional time in development • Tasks of individuation interrupted • Negotiating friendships and intimate relationships • Moving back home • Some treated first when children (2011) Blosser, Jennifer

11. Continuum of Coping • Emotional acceptance . . . Cognitive awareness . . . Adherence to treatment • What led them to decision • What have they read/heard about process (did they read materials) • Glass half full or half empty? (2011) Blosser, Jennifer

12. Risks • Decreased adherence • Failure to thrive • Increased somatization • Question quality of life • Failure of expectations for recovery • Need to adjust to new baseline (2011) Blosser, Jennifer

13. Caregivers • Have different experience • Extra duties/roles • Finances/job pressures for time off • Anticipatory grief • Loss of self care • Bringing baggage with you (pt., too) • Overwhelmed by systems (pt., too)(medical/insurance) • Resources dedicated to patients • Distress higher than patients (2011) Blosser, Jennifer

14. Special Situations • Gay, lesbian and transgender partners as caregivers • Homosexual persons with cancer • Caregivers with disabilities • Language and multicultural differences from treatment staff (2011) Blosser, Jennifer

15. Survivorship • BMTInfoNet survey 2007 • Emotional/Psychiatric • Late Effects • Fatigue • Worry about family/caregivers (2011) Blosser, Jennifer

16. COOL! • Psychosocial support and emotional issues can be predictive of well-being following transplant (Hoodin, et al, 2006) • Hypothesis: emotional adjustment and psychosocial support can be immune modulatory (2011) Blosser, Jennifer

17. Case Example • Medical • History of illness experience • Past medical history • Home and family • Environmental issues • Pets • Health of family (2011) Blosser, Jennifer

18. Financial • Education/Employment • Status of finances • Insurance ok? • Copays • Deductables • Out of pocket maxes • Medicines (2011) Blosser, Jennifer

19. Substances/Mental Health/Legal • History of substance use • Patient • Family • Potential caregivers • Mental health history • Legal issues • Court hearings, financial, incarcerations, wills/advanced directives/POAs (2011) Blosser, Jennifer

20. Learning and Education • Patient and family learning style • What have they received • Did it meet their needs • Was is understood • History of learning problems or literacy issues (2011) Blosser, Jennifer

21. Adjustment • General impressions of mood and coping for patient and family • Relevant history • History with medical situations • Specific phobias • Coping with staff, long waits, when things go wrong • Conclusions/Needs (2011) Blosser, Jennifer

22. How to Cope • Exercise (Wiskman&Huber, 2008) • Education • Nutrition • Medicine • Counseling • Get a role! • Clergy • Family/community (2011) Blosser, Jennifer

23. Integrative approaches • Yoga • Visualization/guided imagery • Prayer/Meditation • Journaling • Celebrate landmarks (Stronach, 2002) • Acknowledge loss, consider gains • Value in being vs. doing (2011) Blosser, Jennifer

24. Community Resources • Organizations related to patient diagnosis • Grants/fundraising • Social Security • Medicaid/Medicare • Grief/bereavement support • Support groups • Churches • Family/friends/neighbors/other patients-families (2011) Blosser, Jennifer

25. Emotional Support • American Psychosocial Oncology Society 1 866 276 7443, apos-society.org • Cancer Info and Counseling Line 1 800 525 3777 • bmtinfonet.org • thewellnesscommunity.org • cancercare.org 1 800 813 4673 (2011) Blosser, Jennifer

26. Fatigue • National Comprehensive Cancer Network www.nccn.org • Oncology Nursing Society www.ons.org/outcomes/volume1/fatigue.shtml • American Cancer Society, National Cancer Institute, Livestrong.org • Your local cancer rehab program (2011) Blosser, Jennifer

27. Cognitive • Meds • Behavioral interventions • Relaxation/stress management • Job retraining • Treatment of underlying medical conditions (2011) Blosser, Jennifer

28. Caregivers • Family Caregiver Alliance www.caregiver.org • National Family Caregivers Association www.nfcacares.org • Wellspouse Association www.wellspouse.org • Caringbridge and Carepages • Young Spouses www.youngcancerspouses.org • www.strengthforcaring.com • www.familycaregiving101.org • www.sharethecare.org (2011) Blosser, Jennifer

29. Young Adults • www.Planetcancer.org • www.stupidcancer.com • www.CampDream.org • www.Fertilehope.org • www.preparetolive.org • www.pregnantwithcancer.org • www.vitaloptions.org • www.cancer.gov/cancertopics/aya/resources • www.cancercare.org (2011) Blosser, Jennifer

30. Humor • Laughter known to reduce blood pressure, increase feel-good neurochemicals and reduce subjective feelings of depression. • “I may not be totally perfect, but parts of me are excellent,” (Ashleigh Brilliant). (2011) Blosser, Jennifer

31. (2011) Blosser, Jennifer

32. Bibliography • Anderson, KO, Giralt, SA, Mendoza, TR, Brown, JO, Neumann, JL, Mobley, GM, Wang, XS and Cleeland, CS. Symptom burden in patients undergoing autologous stem cell transplantation. Bone Marrow Transplantation (2007) 39, 759-766. • Andorsky, DJ, Loberiza Jr, FR and Lee, SJ. Pre-transplantation physical and mental functioning is strongly associated with self reported recovery from stem cell transplantation. Bone Marrow Transplantation (2006) 37, 889-895. • Beanlands, H, Lipton, J, McCay, E, Schimmer, A, Elliott, M, Messner, H, et al. Self-concept as a “BMT Patient,” illness intrusiveness, and engulfment in allogeneic bone marrow transplant recipients. Journal of Psychsomatic Research (2003) 55, 419-425. (2011) Blosser, Jennifer

33. Bishop,M. For Better and For Worse: Impact of Cancer and BMT on Family-Caregivers. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Bolte, S. The Unique Needs of Young Adult Survivors. BMT Info Net Survivorship Conference, (2008) Dallas, TX. • Boswell, HB. Hormone Replacement After Cancer Treatment. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Carlton, T. (1984). Clinical Social Work in Health Settings. New York: Springer Publishing Company. • Fife, BL, Huster, GA, Cornetta, KG, Kennedy, VN, Akard, LP, and Broun, ER. Longitudinal Study of Adaptation to the Stress of Bone Marrow Transplantation. Journal of Clinical Oncology (2000) 18 (7) 1539-1549. (2011) Blosser, Jennifer

34. Giralt, S. Protecting Your Health Long Term. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Gielissen, MFM, Schattenberg, AVM, Verhagen, CAHHVM, Rinkes, MJ, Bremmers, MEJ and Bleijenberg, G. Experience of severe fatigue in long-term survivors of stem cell transplantation. Bone Marrow Transplantation (2007) 39, 595-603. • Goetzmann, L, Klaghofer, R, Wagner-Huber, R, Halter, J, Boehler, A, Muellhaupt, B, et al. Psychosocial vulnerability predicts psychosocial outcome after an organ transplant: Results of a prospective study with lung, liver and bone marrow transplant patients. Journal of Psychosomatic Research (2007) 62, 93-100. • Grant, M, Ferrell, B, Schmidt, GM, Fonbuena, P, Niland, JC, and Forman, SJ. Measurement of quality of life in bone marrow transplantation survivors. Quality of Life Research (1992) 1, 375-384. (2011) Blosser, Jennifer

35. Hochhausen, N, Altmaier, E, McQuellon,R, Davies, S, Papdopolpous, E, Carter, S & Henslee-Downey,J. Social Support, Optimism, and Self-Efficacy Predict Physical and Emotional Well-Being After Bone Marrow Transplantation. Journal of Psychosocial Oncology (2007) 25(1) 87-101. • Hoodin, F, Uberti JP, Lynch, TJ, Steele, P, and Ratanatharathorn, V. Do negative or positive emotions differentially impact mortality after adult stem cell transplant? Bone Marrow Transplantation (2006) 38, 255-264. • Humphreys, CT, Tallman, B, Altmaier, EM and Barnette, V. Sexual functioning in patients undergoing bone marrow transplantation: a longitudinal study. Bone Marrow Transplantation (2007) 39, 491-496. (2011) Blosser, Jennifer

36. Jenks Kettman, J & Altmaier, E. Social support and depression among bone marrow transplant patients. Journal of Health Psychology (2008) 13(1) 39-46. • Johnson Vicksburg, S, Duhamel, K, Smith, M, Manne, S, Winkel, G, Papadoupoulous, E, et al. Global meaning and psychological adjustment among survivors of bone marrow transplant. Psycho-oncology (2001) 10, 29-39. • Meyers, CA. Chemobrain: Is it Real? BMT Info Net Survivorship Conference (2008) Dallas, TX. • Morales, JL. Cancer and the Law – What You Need to Know. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Northen, H. (1982). Clinical Social Work. New York: Columbia University Press. (2011) Blosser, Jennifer

37. Olshansky, S. Chronic Sorrow: A response to having a mentally defective child, Social Casework (1962) 43, 190-193. • Pavletic, S. Chronic Graft-versus-Host Disease. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Schover, L. Sexuality After Transplant: A Workshop for Men. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Steel, JL, Nadeau, K, Olek, M & Carr, BI. Preliminary Results of an Individually Tailored Psychosocial Intervention for Patients with Advanced Hepatobiliary Carcinoma. Journal of Psychosocial Oncology (2007) 25 (3) 19-42. (2011) Blosser, Jennifer

38. Stronach, K. (2002). “Survivors Guide for Bone Marrow and Stem Cell Transplant: What to Expect and How to Get Through it.” 2nd Edition. nbmtLINK, Southfield, MI. • Sullivan, AK, Szkrumelak, N & Hoffman, LH Psychological risk factors and early complications after bone marrow transplantation in adults. Bone Marrow Transplantation (1999) 24, 1109-1120. • Syrjala, K. Riding the Emotional Roller Coaster of Survival. BMT Info Net Survivorship Conference (2008) Dallas, TX. • Syrjala, K. Female Sexuality After Transplant: A Workshop for Women. BMT Info Net Survivorship Conference (2008) Dallas, TX. (2011) Blosser, Jennifer

39. Washington, AW. (1999) Cross-cultural issues in transplant compliance. Transplant Proceedings (1999) 31(4) sup. 1, 27s-28s. • Wiskemann, J and Huber,G. Physical exercise as adjuvant therapy for patients undergoing hematopoietic stem cell transplantation. Bone Marrow Transplantation (2008) 41, 321-329 • jblosser@mcvh-vcu.edu for questions! (2011) Blosser, Jennifer