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 17th 2012

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

• Introduction

• Distressing symptoms and impairment in cancer patients

• Care approaches and cancer rehabilitation in Germany

• Starting survivorship programs - the UCCH approach

Objectives

Cancer and Survivorship

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

Survival rates US ¹

Incidence and Mortality Rates Germany 1980-2006

RKI & GEKID 2008

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

2005 26.01.2012

Cancer Survivorship

„Left alone in surviving“

Symptom and emotional distress, and functional impairments

Cancer Survivorship Relevance for Rehabilitation

Chang et al., Cancer 2000

Quality of life

Number of distressing symptoms

The Burden of Symptom Distress Cancer Survivorship

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

diagnosis

Fear of Cancer Recurrence

100

90

80

70

60

50

40

30

20

10

0

Pre

vale

nce

(%

)

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

Median

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

Pre

vale

nce

(%

)

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

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

Median

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 Graph: prevalence of depression

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

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

+ detection of 4-weeks, 12-months, lifetime prevalence including adjustment/traumatic disorders (CIDI)

Attention deficits („chemo brain“)

Number of impairments in test parameters

Frequ

ency (%

)

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

Scherwath et al., Psychooncology online first 2012

• 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!)

Published online August 27, 2012

How do we understand or what do we mean with…

• Supportive care?

• Palliative care?

• Rehabilitation?

Long-term Effects of Cancer

= 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 by the NCI

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 by the WHO

Early Palliative Care Model

Acute Illness Chronic Illness Advanced

Life-threatening 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)

Am

ou

nt

of

care

Irwin SA & von Gunten CF, in Holland J et al., Psycho-Oncology, 2010

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 by the WHO

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

Model of Functioning and Disability, WHO 2001

• 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 in Germany

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 N=996.154

• > 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 in Germany

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

Cancer Rehabilitation - a systematic Process

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

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

• …

Outcomes of cancer rehabilitation

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 overall effectiveness

Changes in Anxiety and Depression

Mehnert et al., unpublished

N=883 cancer patients (different tumor sites)

Changes in Quality of Life

Mehnert et al., unpublished

N=883 cancer patients (different tumor sites)

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)

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

Mehnert & Koch, Scand J Work Environ Health – online first

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

Mehnert & Koch, Scand J Work Environ Health – online first

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

• Limited evidence-based practice

• 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

Support Needs of Survivors

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

end of therapy in-/outpatient acute care

standardised letter survivorship care plan

patient folder

Guide

Guide

Complemen-tary medicine

Social work

Life style counseling nutrition

sports

Prevention

Psycho-oncology

arts/music therapy

spirituality

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

6 Psychosocial Health Care Professionals 10 Psychosocial Health Care Professionals

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

and rehabilitation research

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

Learning cycle modules

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 www.uke.de