1. Empowering hospital patients as partners in their diagnosis and treatment The example of bone marrow transplantation Hildegard Greinix Medical University of Vienna, Austria

2. Who needs a marrow or blood stem cell transplant? Patients with leukemia, lymphoma and rapidly growing tumors Patients with serious damage of marrow or immunodeficiencies Sometimes very ill individuals with no other treatment options Preemptive SCT in individuals in excellent condition without disease to prevent relapse

3. Outcome of AML patients after unrelated donor HSCT with myeloablative conditioning 19.04.2004 0 024244872 Months after HSCT 96120 20 40 60 80 100 CR1 CR2/3 TRM Refractory Probability in [%] OS TRM

5. Marrow and Blood Stem Cell Transplantation

6. Decision to Transplant Information on procedures, risks, benefits, long-term side effects, rehabilitation Counceling by physicians, nurses, psychologist Information from former patients Visit of the BMT unit Referring physician BMT Attending Patient Relatives MEDICAL ISSUES PSYCHOSOCIAL ISSUES

7. Psychosocial aspects - the patient prior to SCT Pressure: deadly disease, high cure by SCT but potentially lethal side effects. Fear of finding no suitable donor. Psychosocial morbidity, depression, anxiety frequent. Coping mechanisms: fighting spirit, hopelessness, helplessness (affect survival).

8. INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCT Pre-SCT In-Hospital Treatment Outpatient Care Prepare discharge If indicated: Socialworker, Pastor, Consulting psychiatrist Information and education to ensure compliance with therapy Support in dealing with fear, hopelessness, helplessness, isolation Informed Consent Compliance with therapy Physicians, nurses, psychologist - Provide information - Evaluate ressources and coping strategies, areas with potential problems, social support - Counceling If indicated Psycholog. interventions for anxiety, depression Psychosocial support Support by physicians, nurses, psychologist - Provide information, education - Support by team - Integration of family - Close cooperation of staff and patient Psychologic evaluation, prevention, therapy Physiotherapy Support of rehabilitation Continuous medical care Nursing care if necessary Psychologic/psychothera- peutic support Visit of the SCT Unit

9. Concept of Psychosocial Care Patient Physicians Nursing staff Psychologist Physiotherapy Dietician Consulting psychiatrist Spiritual welfare Socialwork MUW BMT

12. - Anxiety - Loss of control - Social Isolation - Pain, nausea, fever Psychosocial aspects – the patient during SCT

13. - Stable working alliance on the basis of trust - Open and comprehensible information on an individual basis - Supporting the patient emotionally - Counterbalancing the feeling of loss of control - Counterbalancing the feeling of isolation - Allow privacy as much as possible Psychosocial Support by the Whole Team

15. Psychosocial aspects - the transplant team Psychosocial well-being of team members –Dominance of technology, rapidity of decision making and practice. Excessive responsibilities. –Highly demanding patients and families. –Highly motivated patients at admission, in case of complications terrible deaths with intensive- care interventions: patients dy of therapy, guilt. –In case of prolonged stress:  illness,  productivity, high turn-over

16. Psychosocial aspects - the transplant team Care for/of the team –Increased communication among team members –Weekly discussions of work with patients with psychologist on voluntarily basis –Psycho-oncological training –Standardization of procedures and documentation –Labour and time consuming effort

17. Marrow and Blood Stem Cell Transplantation

18. Psychosocial aspects - the patient in the outpatient clinic Disappointment over fatigue, high susceptibility to infections and slow return to normal life.  anxiety and depression prior to SCT predict  anxiety and depression after SCT. Problems in long-term: infertility, fear of relapse and secondary malignancies, job loss. Realistic and detailed information from staff about lengthy rehabilitation periods:  frustration about shortcomings in working and social roles.

19. INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCT Pre-SCT In-Hospital Treatment Outpatient Care Prepare discharge If indicated: Socialworker, Pastor, Consulting psychiatrist Information and education to ensure compliance with therapy Support in dealing with fear, hopelessness, helplessness, isolation Informed Consent Compliance with therapy Physicians, nurses, psychologist - Provide information - Evaluate ressources and coping strategies, areas with potential problems, social support - Counceling If indicated Psycholog. interventions for anxiety, depression Psychosocial support Support by physicians, nurses, psychologist - Provide information, education - Support by team - Integration of family - Close cooperation of staff and patient Psychologic evaluation, prevention, therapy Physiotherapy Support of rehabilitation Continuous medical care Nursing care if necessary Psychologic/psychothera- peutic support Visit of the SCT Unit

20. What do we gain with our concept?  post traumatic stress disorder  quality of life in HSCT recipients  patient compliance due to information and education over lengthy times of recovery  satisfaction and quality of work for all staff members due to improved communication and cooperation