The example of bone marrow transplantation Hildegard Greinix Medical University of Vienna, Austria
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Empowering hospital patients as partners in their diagnosis and treatment The example of bone marrow transplantation Hildegard Greinix Medical University of Vienna, Austria 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 Outcome of AML patients after unrelated donor HSCT with myeloablative conditioning 100 CR1 OS 60 CR2/3 40 TRM 20 TRM Probability in [%] 80 Refractory 0 0 19.04.2004 24 48 72 Months after HSCT 96 120 Marrow and Blood Stem Cell Transplantation Decision to Transplant Referring physician BMT Attending Patient Relatives • Information on procedures, risks, benefits, long-term side effects, rehabilitation • Counceling by physicians, nurses, psychologist • Information from former patients • Visit of the BMT unit 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). INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCT Pre-SCT In-Hospital Treatment Visit of the SCT Unit Informed Consent Compliance with therapy Outpatient Care Prepare discharge Psychosocial support Physicians, nurses, psychologist Support by physicians, nurses, psychologist - Provide information - Evaluate ressources and coping strategies, areas with potential problems, social support - Counceling - Provide information, education - Support by team - Integration of family - Close cooperation of staff and patient If indicated Psychologic evaluation, prevention, therapy Psycholog. interventions for anxiety, depression Support of rehabilitation Continuous medical care Nursing care if necessary Psychologic/psychotherapeutic support Physiotherapy If indicated: Socialworker, Pastor, Consulting psychiatrist Information and education to ensure compliance with therapy Support in dealing with fear, hopelessness, helplessness, isolation Concept of Psychosocial Care MUW Physiotherapy Socialwork BMT Physicians Spiritual welfare Patient Nursing staff Psychologist Consulting psychiatrist Dietician Psychosocial aspects – the patient during SCT - Anxiety - Loss of control - Social Isolation - Pain, nausea, fever Psychosocial Support by the Whole Team - 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 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 intensivecare interventions: patients dy of therapy, guilt. – In case of prolonged stress: illness, productivity, high turn-over 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 Marrow and Blood Stem Cell Transplantation 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. INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCT Pre-SCT In-Hospital Treatment Visit of the SCT Unit Informed Consent Compliance with therapy Outpatient Care Prepare discharge Psychosocial support Physicians, nurses, psychologist Support by physicians, nurses, psychologist - Provide information - Evaluate ressources and coping strategies, areas with potential problems, social support - Counceling - Provide information, education - Support by team - Integration of family - Close cooperation of staff and patient If indicated Psychologic evaluation, prevention, therapy Psycholog. interventions for anxiety, depression Support of rehabilitation Continuous medical care Nursing care if necessary Psychologic/psychotherapeutic support Physiotherapy If indicated: Socialworker, Pastor, Consulting psychiatrist Information and education to ensure compliance with therapy Support in dealing with fear, hopelessness, helplessness, isolation 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