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