Transcript Tennessee Comprehensive Cancer Control Coalition

Tennessee
Comprehensive Cancer
Control Coalition
Summit 2009
Meharry Medical College
April 23 -24
Reducing the Burden of
Cancer in Tennessee:
Work
Janice Pazar, Ph.D./HSP, RN
Psychosocial Oncology
The West Clinic
TC4 West Region
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Psychosocial Workgroup
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Survivors, Community Educators, ACS and
LLS, Health administration, Oncology
Social Work, Psychologists…expanding
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Consensus topics: Work concerns along
the cancer continuum, Health Insurance,
and Financial Resources
C.O.P.E. Model
Creativity
 Optimism
 Plan
 Expert Information
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Peter Houts, Ph.D.
Quick Reference for Oncology Clinicians (2006)
Holland, Greenberg, Hughes, (Eds.)
APOS Institute for Research and Education
Stuart Brown, MD
The National Institute of Play
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Play is a state of mind, a basic need, a
biological drive just like sleep
Anticipation, absorbed, surprise, pleasure, we
want to continue
Voluntary, Builds resilience, Balance, task
persistence
Lowers stress and helps regulate emotion
Catalyst
Work and workplace
The opposite of Play is Depression
IOM and ASCO
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From Cancer Patient to Cancer
Survivor: Lost in Transition
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Impact of Survivorship on Patients and
Caregivers
Individualized Roadmaps for each survivor
Negative consequences of cancer and
treatment are substantial and
underappreciated
IOM and ASCO
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From Cancer Patient to Cancer
Survivor: Lost in Transition
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More than 60% are aged 65 and older
(work, loss of income, independence,
burden on adult children)
More than 40% are aged between 21 and
65 (income, employer based health
insurance, time off work, roles and
responsibilities, sandwich generation, job
changes, etc.)
IOM and ASCO
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From Cancer Patient to Cancer Survivor: Lost
in Transition
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Most cancer patients who worked before their
diagnosis continue to work, but they often
require some kind of accommodation.
Fears of job discrimination
Symptoms and functional limitations are more
likely today to interfere with work.
Need efforts to minimize adverse effects of
cancer on employment in the short term and
long term.
Burden of Illness in Cancer
Survivors
Purpose: to estimate the burden of illness in a national
population using 2000 National Health Interview
Survey
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1823 cancer survivors; 5469 matched age, sex,
education
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Compared two groups overall and subgroups
stratified by tumor type and time since diagnosis
Yabroff, K. R., Lawrence, W. F., Clauser, S., Davis, W.W., Brown, M.L.
(2004). Burden of Illness in Cancer Survivors: Findings from a
Population-Based National Sample. Journal of the National Cancer
Institute, 96 (17): 1322-1330.
Significant Findings
Survivors lost more days of work than
matched controls
• Patterns of employment and lost
productivity: complicated
• Newly diagnosed were more likely to be
working and lost more work days.
• People diagnosed 2 or more years ago
were less likely to be working due to
health problems compared to matched
controls.
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Yabroff, K. R., Lawrence, W. F., Clauser, S., Davis, W.W., Brown,
M.L. (2004). Burden of Illness in Cancer Survivors: Findings from a
Population-Based National Sample. Journal of the National Cancer
Institute, 96 (17): 1322-1330.
Employment in a cohort of
breast cancer patients
Purpose: to identify possible discrimination
and other obstacles to remaining at work
Method: Questionnaire with breast cancer
patients employed at diagnosis. Diagnosis
was at least 6 months before interview.
Study included 96 consecutive patients
aged 18 to 65 years.
Villaverde, R. M., Batlle, J.F., Yllan, A. V., Gordo, A.M.J., Sanchez,
A.R., Valiente, B. SJ, and Baron, M. G. (2008). Employment in a
cohort of breast cancer patients. Occupational Medicine 58 (): 509511.
Employment in a cohort of
breast cancer patients
Results: After diagnosis and during treatment,
80% did not RTW
At the end of treatment, 56% RTW.
Almost 30% noticed changes in relation with
co-workers and managers.
Conclusion: The problems women encountered in
RTW, mainly linked to residual
symptoms of disease and treatment.
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Villaverde, R. M., Batlle, J.F., Yllan, A. V., Gordo, A.M.J., Sanchez,
A.R., Valiente, B. SJ, and Baron, M. G. (2008). Employment in a
cohort of breast cancer patients. Occupational Medicine 58 (): 509511.
Work
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Handbook of Cancer Survivorship
(2007)
Michael Feuerstein, Editor
Chapter 21 “Work”
Jos Verbeck and Evelien Selten,
Authors
Work and Cancer Survivors (2009)
Work: Verbeek and Spelten
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Over 40% of cancer patients are working
adults
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Early research focused on legal issues and
discrimination
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More recently scope has widened to include
factors impacting RTW
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Work related Factors
Disease and Treatment Related Factors
Person-Related Factors
Literature Review 1985 -1999
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Factors with Positive Association for RTW
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Coworker Positive Attitudes
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Flexibility and Discretion with Workload and
Hours
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Longer time since end of treatment
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Mobilizing social support
Literature Review 1985 -1999
Factors with Negative Association for RTW
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Physical Demands
Breast, Head and Neck, CNS, most challenged
Changing Attitudes: Reduced importance of
work
Fatigue, Depression, Sleep, Physical
Symptoms, Cognitive Dysfunction,
Psychological Distress
Literature Review 1985 -1999
Mixed Results among studies
• Disease Stage and Cancer Site
• Increasing Age
• Fatigue
• Reaction to Diagnosis: Less Confident
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Authors noted all studies suffered methodological
weaknesses
Work: Verbeek and Spelten
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Interventions to Improve RTW
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Intentional
Variation among individuals is great
Not aware of any studies on need for support in
return to work efforts
Support from treating physicians is
appreciated
Symptom management/physical integrity
Adapting work environment
Patient attitudes and beliefs (Family)
Work: Verbeek and Spelten
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For patients with musculoskeletal disorders
and mental health problems,
Patient expectations about recovery
best predictors of RTW.
(How do the patient and family construe illness?)
Work: Verbeek and Spelten
What Outcomes Should be Addressed? Unclear
• Narrow the gap in employment between cancer
survivors and healthy controls
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Gap may vary by country due to social security policies
There may be confusion about RTW policies
•Shorter
(optimize) time to RTW
•Possibly seek to decrease number of survivors who
stop working for “health reasons”
•Referrals for physical rehabilitation and treatment of
psychological distress.
Impact of Physical and
Psychosocial factors on Work
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Purpose:
What changes do cancer survivors experience
in work characteristics and occupational role
after treatment?
What physical and psychosocial factors are
associated with these changes?
Steiner, J.F., Cavender, T.A., Nowels, C.T., Beaty, B.L., Bradley, C.J., (2008)
The impact of physical and psychosocial factors on work characteristics after cancer.
Psycho-Oncology 17: 138-147
Impact of Physical and
Psychosocial factors on Work
Methods:
 Stratified sample 21-64 years from Colorado
Central Cancer Registry
 Survey included 17 item validated scale
assessing positive benefits associated
 158 telephone interviews, 1 hour, average of
23.4 months after initial diagnosis
Steiner, J.F., Cavender, T.A., Nowels, C.T., Beaty, B.L., Bradley, C.J., (2008)
The impact of physical and psychosocial factors on work characteristics after cancer.
Psycho-Oncology 17: 138-147
Impact of Physical and
Psychosocial factors on Work
Results:
 CHANGES:
 8 of 100 stopped working
 35 with predicted survival <2 yrs, 17% stopped
 84 with longer predictions, 3% (4) stopped
 92 who remained working, 57% reduced weekly
hours worked by average of 15.6
 20% changed duties, 8% changed employers,
8% stopped supervising, 5% reduced from two
jobs to one
Steiner, J.F., Cavender, T.A., Nowels, C.T., Beaty, B.L., Bradley, C.J., (2008)
The impact of physical and psychosocial factors on work characteristics after cancer.
Psycho-Oncology 17: 138-147
Impact of Physical and
Psychosocial factors on Work
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Factors:
 Reduced work hours associated with physical
symptoms, lack of energy, N/V, psychological
symptoms, fears, bored and useless, depressed
 Few workplace barriers, most informed employers and
coworkers of diagnosis, groups did not differ
 Those with employer sponsored health insurance, 42%
avoided changing jobs, especially among those reducing
their work hours.
 56% reported changes in work role, 39% cut work load
and overtime.
Steiner, J.F., Cavender, T.A., Nowels, C.T., Beaty, B.L., Bradley, C.J., (2008)
The impact of physical and psychosocial factors on work characteristics after cancer.
Psycho-Oncology 17: 138-147
Impact of Physical and
Psychosocial factors on Work
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Recommendations
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Measurement of work is complex
Consistent with IOM, providers ask about
impact of symptoms on work
Identify those who can benefit from
aggressive symptom management and
rehabilitation programs
Attend to fears and psychological concerns
that might affect work as well as QOL
USA Today
by Stephanie Armour, 11/20/06
 “Cancer Patients Keep on Working”
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Employees tell many stories of support
Since 1992, over 5,000 EEOC complaints
of discrimination due to cancer
Delicate situation with confidentiality and
privacy concerns
Employers are legally required to make
reasonable accommodation.
USA Today
by Stephanie Armour, 11/20/06
 “Cancer Patients Keep on Working”
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Employees are watching…and asking
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What if I get sick?
How do cancer patients
make decisions about work?
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Complicated patterns of employment following
diagnosis, during treatment, and in
survivorship
Individual patterns vary widely though people
with cancers of breast, head and neck, and
CNS are most challenged.
Decision science may help inform our
understanding.
Jon Gertner, “The Green Mind” The New York
Times Magazine, April 19, 2009
TC4 West Region
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Psychosocial Workgroup objectives as of
March 2009
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Resource Guide for online/print distribution to
providers and consumers, emphasis on
specific local resources when available
Seminars for community and providers to
increase awareness and knowledge of
resources, manage expectations, aid in
decision-making
Foster creative and artful attitudes and
activities and enhance meaningful
relationships to reduce the burden of suffering
RESOURCES
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Cancer Legal Resource Center
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www.CancerLegalResourceCenter.org
The Manual: A Legal Resource Guide for
People with Cancer
Webinar Series
Speakers and Seminars
Cancer Rights Conference
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October 2009
RESOURCES
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Cancer and the Workplace
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Cancerandcareers.org
www.fmla.org
www.nationalpartnership.org
www.dol.gov/esa
www.eeoc.gov/facts/cancer.html
RESOURCES
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National Coalition for Cancer Survivorship:
Cancer Survival Toolbox
www.canceradvocacy.org/toolbox
CancerCare www.cancercare.org
LLS www.lls.org
www.patientadvocate.org
ACS www.cancer.org
NCI Financial assistance factsheet
www.cancer.gov/cancertopics/factsheet
RESOURCES
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AARP www.aarp.org/families/caregiving
APOS www.apos-society.org/helpline
Family Caregiver Alliance
www.caregiver.org 1-800-445-8106
VA Benefits www.va.gov/health
1-800-827-1000