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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. Psychosocial Workgroup

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Tennessee Comprehensive Cancer Control Coalition

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  1. Tennessee Comprehensive Cancer Control Coalition Summit 2009 Meharry Medical College April 23 -24

  2. Reducing the Burden of Cancer in Tennessee: Work Janice Pazar, Ph.D./HSP, RN Psychosocial Oncology The West Clinic

  3. 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

  4. C.O.P.E. Model • Creativity • Optimism • Plan • Expert Information Peter Houts, Ph.D. Quick Reference for Oncology Clinicians (2006) Holland, Greenberg, Hughes, (Eds.) APOS Institute for Research and Education

  5. 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

  6. 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

  7. 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.)

  8. 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.

  9. 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.

  10. 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.

  11. 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 (): 509-511.

  12. 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. • 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.

  13. Work • Handbook of Cancer Survivorship (2007) • Michael Feuerstein, Editor • Chapter 21 “Work” • Jos Verbeck and Evelien Selten, Authors • Work and Cancer Survivors (2009)

  14. 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

  15. 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

  16. Literature Review 1985 -1999 Factors 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

  17. 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

  18. 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)

  19. 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?)

  20. 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.

  21. 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

  22. 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

  23. 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

  24. 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

  25. 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

  26. 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.

  27. USA Todayby Stephanie Armour, 11/20/06 • “Cancer Patients Keep on Working” • Employees are watching…and asking • What if I get sick?

  28. 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

  29. 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

  30. 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

  31. RESOURCES • Cancer and the Workplace • Cancerandcareers.org • www.fmla.org • www.nationalpartnership.org • www.dol.gov/esa • www.eeoc.gov/facts/cancer.html

  32. 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

  33. 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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