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Tennessee Comprehensive Cancer
Control Coalition
Tennessee Comprehensive Cancer
Control CoalitionSummit 2009
Meharry Medical CollegeApril 23 -24
Summit 2009Meharry Medical College
April 23 -24
Reducing the Burden of Cancer in Tennessee:
Work
Reducing the Burden of Cancer in Tennessee:
Work
Janice Pazar, Ph.D./HSP, RNPsychosocial Oncology
The West Clinic
Janice Pazar, Ph.D./HSP, RNPsychosocial Oncology
The West Clinic
TC4 West Region Psychosocial Workgroup
Survivors, Community Educators, ACS and LLS, Health administration, Oncology Social Work, Psychologists…expanding
Consensus topics: Work concerns along the cancer continuum, Health Insurance, and Financial Resources
C.O.P.E. Model CreativityOptimismPlanExpert Information
Peter Houts, Ph.D. Quick Reference for Oncology Clinicians (2006) Holland, Greenberg, Hughes, (Eds.)APOS Institute for Research and Education
Stuart Brown, MDThe National Institute of Play• 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 From Cancer Patient to Cancer
Survivor: Lost in Transition 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 From Cancer Patient to Cancer
Survivor: Lost in Transition 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 From Cancer Patient to Cancer Survivor: Lost
in Transition 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
• 1823 cancer survivors; 5469 matched age, sex, education
• 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.
• 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 patientsPurpose: 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 (): 509-511.
Employment in a cohort of breast cancer patientsResults: 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.
• 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 (): 509-511.
Work 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 Over 40% of cancer patients are working
adults
Early research focused on legal issues and discrimination
More recently scope has widened to include factors impacting RTW Work related Factors Disease and Treatment Related Factors Person-Related Factors
Literature Review 1985 -1999• Factors with Positive Association for RTW
• Coworker Positive Attitudes
• Flexibility and Discretion with Workload and Hours
• Longer time since end of treatment
• Mobilizing social support
Literature Review 1985 -1999Factors with Negative Association for RTW
• 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
• Authors noted all studies suffered methodological weaknesses
Work: Verbeek and Spelten• Interventions to Improve RTW
• 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• 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• 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 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 WorkMethods: 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 WorkResults: 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 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 Recommendations
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 Todayby Stephanie Armour, 11/20/06 “Cancer Patients Keep on Working”
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 Todayby Stephanie Armour, 11/20/06 “Cancer Patients Keep on Working”
Employees are watching…and asking
What if I get sick?
How do cancer patients make decisions about work? 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 Psychosocial Workgroup objectives as of
March 2009 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 Cancer Legal Resource Center
www.CancerLegalResourceCenter.org The Manual: A Legal Resource Guide for
People with Cancer Webinar Series Speakers and Seminars Cancer Rights Conference
October 2009
RESOURCES Cancer and the Workplace
Cancerandcareers.org www.fmla.org www.nationalpartnership.org www.dol.gov/esa www.eeoc.gov/facts/cancer.html
RESOURCES 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 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
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