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 donorHSCT with myeloablative conditioning

19.04.2004

00 24 48 72

Months after HSCT96 120

20

40

60

80

100

CR1

CR2/3

TRM

Refractory

Pro

babi

lity

in [%

] OS

TR

M

Marrow and Blood Stem Cell Transplantation

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

PatientRelatives

MEDICAL ISSUES

PSYCHOSOCIAL ISSUES

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 INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCTSUPPORT AND THERAPY DURING SCT

Pre-SCTPre-SCT In-Hospital In-Hospital TreatmentTreatment

Outpatient CareOutpatient Care

Prepare dischargePrepare discharge

If indicated: Socialworker, Pastor, Consulting psychiatristIf indicated: Socialworker, Pastor, Consulting psychiatrist

Information and education to ensure compliance with therapyInformation and education to ensure compliance with therapySupport in dealing with fear, hopelessness, helplessness, isolationSupport in dealing with fear, hopelessness, helplessness, isolation

Informed Consent Informed Consent Compliance with therapyCompliance with therapy

Physicians, nurses, Physicians, nurses, psychologistpsychologist- Provide information- Evaluate ressources and coping strategies, areas with potential problems, social support- Counceling

If indicatedIf indicatedPsycholog. interventions for anxiety, depression

Psychosocial supportPsychosocial support

Support by physicians, Support by physicians, nurses, psychologistnurses, psychologist - Provide information, education - Support by team- Integration of family - Close cooperation of staff and patient

Psychologic evaluation, Psychologic evaluation, prevention, therapy prevention, therapy

PhysiotherapyPhysiotherapy

Support of rehabilitationSupport of rehabilitation

Continuous medical careContinuous medical care

Nursing care if necessaryNursing care if necessary

Psychologic/psychothera-Psychologic/psychothera-peutic supportpeutic support

Visit of the SCT UnitVisit of the SCT Unit

Concept of Psychosocial Care Concept of Psychosocial Care

Patient

Physicians

Nursing staff

Psychologist

Physiotherapy

DieticianConsulting psychiatrist

Spiritual welfare

Socialwork

MUW

BMT

- Anxiety

- Loss of control

- Social Isolation

- Pain, nausea, fever

Psychosocial aspects – the patient during SCT

- 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

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

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 INTERDISCIPLINARY PSYCHOSOCIAL SUPPORT AND THERAPY DURING SCTSUPPORT AND THERAPY DURING SCT

Pre-SCTPre-SCT In-Hospital In-Hospital TreatmentTreatment

Outpatient CareOutpatient Care

Prepare dischargePrepare discharge

If indicated: Socialworker, Pastor, Consulting psychiatristIf indicated: Socialworker, Pastor, Consulting psychiatrist

Information and education to ensure compliance with therapyInformation and education to ensure compliance with therapySupport in dealing with fear, hopelessness, helplessness, isolationSupport in dealing with fear, hopelessness, helplessness, isolation

Informed Consent Informed Consent Compliance with therapyCompliance with therapy

Physicians, nurses, Physicians, nurses, psychologistpsychologist- Provide information- Evaluate ressources and coping strategies, areas with potential problems, social support- Counceling

If indicatedIf indicatedPsycholog. interventions for anxiety, depression

Psychosocial supportPsychosocial support

Support by physicians, Support by physicians, nurses, psychologistnurses, psychologist - Provide information, education - Support by team- Integration of family - Close cooperation of staff and patient

Psychologic evaluation, Psychologic evaluation, prevention, therapy prevention, therapy

PhysiotherapyPhysiotherapy

Support of rehabilitationSupport of rehabilitation

Continuous medical careContinuous medical care

Nursing care if necessaryNursing care if necessary

Psychologic/psychothera-Psychologic/psychothera-peutic supportpeutic support

Visit of the SCT UnitVisit of the SCT Unit

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