Long-term effects of cancer:

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Long-term effects of cancer:

consequences for supportive and palliative

care integrating rehabilitation requirements

Martin Härter

Presentation at the European Cancer Rehabilitation and Survivorship Symposium

Kopenhagen, September 17th₂₀₁₂

Department of Medical Psychology Hubertus Wald Tumor Center  University Cancer Center Hamburg (UCCH)

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• Introduction

• Distressing symptoms and impairment in cancer patients • Care approaches and cancer rehabilitation in Germany • Starting survivorship programs - the UCCH approach

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Cancer and Survivorship

¹ data presented by Karen Syrjala (Cancer Survivorship Symposium - Hamburg 2011)

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Incidence and Mortality Rates

Germany 1980-2006

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Cancer Care Trajectory

Recurrence/ second cancer Cancer-free survival Managed chronic or intermittent disease Treatment with intent to cure Diagnosis and staging Palliative treatment Death Treatment failure IOM, 2005 Start here Survivorship care

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2005 26.01.2012

Cancer Survivorship

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Symptom and emotional distress, and functional impairments

Cancer Survivorship

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Chang et al., Cancer 2000

Quality of life

Number of distressing symptoms

The Burden of Symptom Distress

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Anxiety 38% of patients report moderate (> 8) to high (> 11) anxiety levels Depression 22% of patients report moderate (> 8) to high (> 11) depression levels

Mehnert & Koch, J Psychosom Res 2008

Anxiety and Depression

1083 Breast Cancer Patients (Hamburg Cancer Register) – HADS Scores

18 to 24 months up to 36 months

up to 48 months up to 60 months More than 60 months post

diagnosis

18 to 24 months up to 36 months

up to 48 months up to 60 months More than 60 months post

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Fear of Cancer Recurrence

100 90 80 70 60 50 40 30 20 10 0 Pr e vale n ce (%)

Sample: n=883 cancer patients (mean=23 months post diagnosis)

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Fear of Cancer Recurrence

Cancer Survivors 49 50 54 62 35 32 20

Hematological Colon / Rectum Skin Breast Head and Neck Gynecological Lung

100 90 80 70 60 50 40 30 20 10 0 Pr e vale n ce (%)

Sample: n=883 cancer patients (mean=23 months post diagnosis)

Fear of Progression Questionnaire - FoP-Q-SF) Mehnert et al. 2012 (in submission)

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Mental Comorbidity

in Cancer Patients

Meta-analyses (>70 studies) analysed

rates of mental disorders (DSM-IV/ICD-10):

– 17.9% affective disorders (12 months) 1

– 19.4% adjustment disorders 2

– 19.3% anxiety disorders (12 months) 1

– 38.2% any mood disorder 2

1 _{Vehling et al.,}_{Psychother Psych Med 2012;62:249–258}

2 _{Mitchell et al.,}_{Lancet Oncology 2011;12(2):160-74}

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+ representative sample for tumor entities and care facilities, cancer incidence-based recruitment strategy

+ sample (N=2.400) > earlier study samples, allows subgroup analyses etc.

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Attention deficits („chemo brain“)

Number of impairments in test parameters

Fr eq u en cy (%) About 40% of patients showed impaired attention at each assessment point. T0: before HSCT T1: 3 months after HSCT T2: 12 months after HSCT

Prevalence of Cognitive Impairments

102 Patients with hematological cancers and stem cell transplant

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• breast cancer patients can expect normal cognitive functioning after 6 mo.

• exception: slight impairments in verbal abilities (word-finding difficulty) and

visuospatial abilities (getting lost more easily)

• Efforts needed to develop a core set of neuropsychological tests to be used

across studies to facilitate interpretation and meta-analysis

• chemobrain is commonly reported by cancer survivors, research on the

topic is relatively new  manuscripts that report null results are likely to be of interest (publication bias!)

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How do we understand or what do we mean with…

• Supportive care? • Palliative care? • Rehabilitation?

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= care given to improve the quality of life of patients who have a serious or life-threatening disease. Goal is to prevent or treat as early as possible the symptoms of a disease, side effects caused by

treatment of a disease, and psychological, social, and spiritual

problems related to a disease or its treatment.

Also called comfort care, palliative care, and symptom management.

Definition of Supportive Care

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Palliative care

is defined as an approach that improves the quality of life of patients and their families facing the problem

associated with life-threatening illness, through the prevention

and relief of suffering by means of early identification and

impeccable assessment and treatment of pain and the physical,

psychosocial and spiritual problems.

Definition of Palliative Care

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Early Palliative Care Model

Acute Illness Chronic Illness _{Life-threatening}Advanced Death

Palliative (Supportive) Care  End of life/hospice care

6-months prognosis Diagnosis

Time ---  ---  ---  --- 

Therapies to modify disease

Bereavement care Last hours of life care

(dying) Last closure

(Planning for death)

Amoun

t

of

c

are

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Rehabilitation of people with disabilities is a process aimed at enabling them to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels.

Rehabilitation provides disabled people with the tools they need to attain independence and self-determination.

Definition of Rehabilitation

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WHO Model of Functioning,

Disability and Rehabilitation (ICF)

The (re-)integration of individuals with disabilities, chronic health conditions, diseases and handicaps into social and work life are important aspects according to the ICF.

Health Condition (disorder or disease)

Participation (Restriction) Body Functions &

Structures (Impairment)

Activities

(Limitations)

Environmental Factors Personal Factors

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•Long experience and large knowledge in rehabilitation

•Legal basis that secures the financial basis for the access to rehabilitation services

•Availability of an of specialized service providers

•Comprehensive concept of rehabilitation

•Interdisciplinary rehabilitation teams

•Intensive striving for quality and rehabilitation research

Rehabilitation System

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Cancer 18% Psychiatry/ Psychosomatics 13% Cardiology 9% Addiction 6% Metabolic diseases 4% Others 13% Orthopedics 37%

German Pension Insurance 2012 Rehabilitation Report

Rehabilitation Measures 2010

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• > 160.000 cancer rehabilitation measures per year (mainly paid by pension insurances)

• Traditionally mainly carried out in the inpatient setting,

outpatient rehabilitation programs are rare (< 2% in oncology)

• Conducted in about 100 specialised rehabilitation clinics

• Multidimensional therapeutic approach (medical treatment, physical therapy, psychotherapy, patient education, sports, counselling…), up to 6 treatment sessions per day

• Duration of rehabilitation measures: normally 3 weeks

The System of Cancer Rehabilitation

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1. Admission 2. Rehab-Assessment 3. Goal and

rehab-planning 4. Rehab. inter-ventions 5. Discharge Assessment 6. Rehab. Aftercare 1) Preparation of admission, patient information via brochures, internet, flyer

2) Screening and (if necessary) clinical assessment based on the

ICF: medical, functional, social and mental limitations

3) Realistic, concrete, indivi-dualized agreement between

patient and rehab team

5) See 2: ICF-based socio-medical evaluation

and prognosis

4) Use of indication-generic and specific interventions, coordinated by the (medical) chairperson, process assessment

and program adaptation

6) Specific preparation and information about after care facilities, contact to self-help

groups, self-management programs, e-health aftercare

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Patients‘ Needs for Cancer Rehabilitation

Social impact Activities of daily living Emotional/ cognitive impact Quality of life Leasure/ recreation Symptoms and side effects Patient satisfaction treatment/service Return to work

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Interventions in Rehabilitation

Depending on individual functional impairments (initial assessment):

• Medical treatment

• Physiotherapy and physical therapy, sports and exercise therapy

• Occupational therapy / ergotherapy

• Health promotion and patient education

• Psychological diagnostics and counseling

• Relaxation techniques

• Nutritional counseling

• Social, social law and occupational counseling

• Job-related measures

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Bergelt et al. 2009 0 10 20 30 40 50

1 not successful at all 2 3 4 5 very successful

Percent

outpatient rehabilitation (n=380) inpatient rehabilitation (n=450)

Satisfaction with Rehabilitation

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Changes in Anxiety and Depression

Mehnert et al., unpublished N=883 cancer patients (different tumor sites)

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Changes in Quality of Life

Mehnert et al., unpublished N=883 cancer patients (different tumor sites)

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Cancer Patients and Employment

… about 41% of all cancer patients will experience the cancer diagnosis during the age between 15 and 64 years, when career and work-related issues play an important role in individual and family lifes.

Cancer incidence in patients between 15-64 years old and between 35-64 years old in comparison to the total cancer incidence (RKI & GEKID, 2008)

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Cancer site (n=568) Patients (%) returned to work Patients (%) returned immediately after rehabilitation Mean weeks (SD) to return to work after rehabilitation Hematological 94 50 5 ( 7.5) Colon/Rectum 86 44 10 ( 13.4) Gynecological 74 47 5 ( 6.8) Skin 83 79 3 ( 6.0) Breast 78 49 5 ( 8.0)

Head and Neck 58 36 8 ( 10.3)

Lung 44 10 14 ( 14.2) Total 76 50 11 ( 11) P[Chi2_{] < 0.001,} ρ = 0.18 P[Chi2_{] < 0.05,} ρ = 0.19 P[MANOVA] < 0.05, eta2_{= 0.05}

Return to Work - Time to Return

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Work Situation after Rehabilitation

Work after cancer rehabilitation (12 months)

76% of all patients (n=750) returned to work

• 475 (81%) to their former position/work place

• 115 (19%) changed their position/work place within or changed company • 145 (25%) report mild to severe impairments at their daily work

Predictors:baseline RTW intention (OR 6.2), employer accommodation (OR 1.93), high job requirements

(OR=1.84), cancer recurrence/progression (OR=0.27), baseline sick leave absence (OR=0.26), dificult social

interactions (OR=0.58)  R²=0.59

CAVE:

Occupational motivation and skepticism towards RTW should be carefully assessed when planning rehabilitation programs

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Problems of Rehabilitation Services

in Germany

•Unsolved questions of needs: under- and overuse

•Strongly developed in-patient rehabilitation and lack of

community based services

•Limited provision of outpatient facilities and aftercare

•Problems with the interfaces between financing agencies and different service providers

•Lack of continuity and limited flexibility in supplying services

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• Prevention und early detection of new and recurrent cancer

• Prevention und early detection of long term sequelae

- of cancer disease

- of cancer treatment

• Care coordination between specialists and other physicians (GP)

• Cancer treatment history

• Care/survivorship/rehabilitation plan

Institute of Medicine; www.iom.edu

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UCCH - L.O.T.S.E.

end of therapy in-/outpatient acute care

standardised letter survivorship care plan

patient folder

Guide

Complemen-tary medicine Social work Life style counseling nutrition sports Prevention Psycho-oncology arts/music therapy spirituality

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Provision of Psycho-oncological Care

Management of Psychosocial Distress

University Cancer Center Hamburg (UCCH)

Center for Oncology

Psychosocial Consultation & Liaison and Outpatient Care Services

Psychooncological Outpatient Care Clinic

(Department of Medical Psychology)

Co-operations with Inpatient Radiotherapy

Inpatient Palliative Care Unit

Hematology/Stem cell Transplant. Oncol. Dermatology, Pulmology

Outpatient Radiotherapy Oncological Outpatient/Day Care

Surgery and other clinics

and services _COSIP

Psychiatry Servives Ambulant Clinics/Care Facilities

Hospice Services

Breast Center

▪ Inpatient Care

▪ Outpatient and Day Care

Prostate Center

▪ Inpatient Care ▪ Outpatient Care

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Approaches for effective

Rehabilitation Services

• Reinforcing the involvement of patients

• Early/valid evaluation of patients`needs for rehabilitation

• Extension of out-patient services and aftercare

• Manageing the interfaces via integrated care approaches

• Stronger orientation towards return to work

• Emphasis on needs and outcomes by quality management

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Communication competencies

reform curriculum UKE

Basic skills in communication + basic knowledge Shared decision making Behavior change counseling - MI Breaking bad news Communication in palliative situations Communication with migrants and difficult patients Intra- and interprofessio-nal commu-nication Step I Step II Step III

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Thank you for your attention

Thanks to my colleagues Anja Mehnert, Corinna Bergelt, Frank Schulz-Kindermann, Georgia Schilling and Uwe Koch

Prof. Dr. Dr. Martin Härter

Department of Medical Psychology Martinistraße 52, 20246 Hamburg

m.haerter@uke.de