Healthcare Reform and Cancer Survivorship: Implications for Care & Research

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1 Healthcare Reform and Cancer Survivorship: Implications for Care & Research Julia H. Rowland, Ph.D., Director Office of Cancer Survivorship National Cancer Institute National Institutes of Health DHHS Society of Behavioral Medicine Cancer SIG Workshop April 27, 2011 Washington, DC

2 Visibility of Cancer Survivorship at the National Level

3

4 Health-Disparities in Cancer Survivorship Outcomes At 2 years post-treatment, African American prostate cancer survivors (PCS) report lower satisfaction with the degree of overall treatment outcomes than white or other ethnic PCS groups (Sanda et al, New Eng J Med 2008) Low-income Hispanic breast cancer survivors report high levels of economic distress which is negatively associated with QOL outcomes (Ell et al, Cancer 2007) Underutilization of surveillance mammography in older breast cancer survivors increases risk of mortality (Lash et al, J Clin Oncol 2007; Field et al, J Gen Intern Med 2008) Rural cancer survivors report worse mental health functioning, greater anxiety, more depression and more emotional problems than non-rural cancer survivors (Burris & Andrykowski Psychooncology 2010)

5 1. General Provisions under the Act that benefit cancer survivors/families Precludes discrimination of those with a preexisting condition (and potential to enroll in new insurance pools for those excluded earlier) Prohibits the imposition of lifetime and annual caps on benefits Coverage for clinical trial participation Right to designate or retain your primary care provider PCORI and comparative effectiveness components

6 2. Cancer and Aging Interface National Cancer Institute

7 Proportion (Incidence %) of Tumors in Patients 65+* Bladder Colon Pancreas Lung Stomach Prostate Rectum ALL SITES Leukemia NHL Kidney Ovary CorpusU Oral/Pharynx Breast Brain *All Race/sex groups. Source: NCI SEER Program Data, Malignant only.

8 Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Current Age (Invasive/1st Primary Cases Only, N = 11.7 M survivors) National Cancer Institute 0-19 Years 1% 70+ Years 50% Years 2% Years 4% Years 8% Years 16% Years 22% Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, , National Cancer Institute. Bethesda, MD, csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010.

9 2. Cancer and Aging Interface: Implications for Care: The majority of survivors are medicare eligible, and draw upon social security Many family caregivers are older as well Research: Lack of research on the impact (physical, psychologcial, social) of cancer among older adults Compelling reasons for CMS to support studies of survivors to reduce national burden of cancer care

10 3. Cancer as a chronic illness National Cancer Institute

11 Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Time From Diagnosis and Gender (Invasive/1st Primary Cases Only, N = 11.7 M survivors) People in millions National Cancer Institute Males Females 0 to <5 5 to <10 10 to <15 15 to <20 20 to <25 25 Years from Diagnosis Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, , National Cancer Institute. Bethesda, MD, csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site,

12 Cancer Survivors at Increased Risk Disease recurrence/ new cancers (>756K; 16% of new diagnoses) Cardiovascular disease Obesity/Diabetes Osteoporosis Unique pain syndromes Functional decline Poor quality of life

13 % with Limitations: Survivors vs. General Population (NHIS ) General Survivors 10 0 Psych. Problems 1+ ADL/IADL 1+ functional Work Hewitt, Rowland, Yancik. J Gerontol. 58:82, 2003

14 Focus of Post-Treatment Interventions Prevent recurrence/progression of cancer Control persistent or late occurring side effects of cancer or its treatment Prevent or treat other co-morbid conditions Improve general health (incl. boost immune function/vital capacity) & sense of well-being All increase sense of control over and active participation in personal health -- facilitate selfefficacy and self-management

15 3. Cancer as a chronic illness: Implications for Care Support for self-management endorsed Prevention is also a focus of attention Research Comparative effectiveness research will play a key role in informing us about what model may work best for delivering survivorship care, including evaluation of survivorship care planning and post-treatment rehabilitation models

16 4. Cancer as a teachable moment National Cancer Institute

17 The Growing Focus on Health Promotion 1. Growing number of survivors who 2. Are living longer 3. Are older, and also aging 4. Are at risk for a number of co-morbid health conditions (and may also have a history of others) 5. Are asking for help in reducing cancerrelated morbidity and mortality 6. Can benefit from health promoting inventions

18 Potential Role of Lifestyle Modification Source: Demark-Wahnefried Diet Exercise Smoking Cessation Depression Fatigue Adverse Body Composition Functional Decline Comorbidity Survival / Progression (growing) (growing)?? Possible benefit Probable benefit Convincing benefit

19 Do Survivors Talk with their Physicians about Health Behaviors? Cancer Survivors Adults without Cancer Diet Discussion 30% 23% <.0001 Exercise Recommendation 26% 23% <.005 Smoking Assessment 42% 41%.41 p Sabatino et al., 2007, Journal of Clinical Oncology (NHIS 2000 data) d

20 4. Cancer as a teachable moment: Implications for Care: Emphasis on preventive care may help survivors Research: Address the question of whether lifestyle interventions improve length of survival, not simply quality of life

21 5. Cancer as a complex illness National Cancer Institute

22 The Changing Content and Context of Cancer Care Treatments for cancer often complex and multimodal (surgery, radiation, chemotherapy, hormonal therapy, immunotherapy) Cancer patients (continue to) receive most of their care in the outpatient setting, largely in the community (versus big cancer centers) More therapies are taken long-term; many are oral Cancer is a disease that affects the entire family, and often a community

23 Impact of Cancer on Caregivers CanCORS N = 677 (63% spouse, 12% adult child, 25% other) 37% were providing > 20 hours of care weekly; 13% provided care > 8 hours daily 25% reported role conflict & strain; 17% had primary parenting responsibility or also cared for another family member, and worked for pay Half indicated they were providing clinical care without desired training (pain & fatigue management, medication administration) 21% reported their own health as fair or poor Van Ryn M et al, Psycho-Oncology, 2010

24 5. Cancer as a complex illness: Implications for Care: Support for patient navigators Support for medical homes Emphasis on coordination of care; EHRs Research: Evaluate the impact of navigation on cost, QOC, and survivorship outcomes Explore the roll of patient education and clinician/pt communication on health behaviors/outcomes Examine the roll that co-morbidities play in survivors well-being during and after cancer

25 Unique (and Synergistic) Opportunities in the Future

26 Challenges for the Future: Address the gap areas in our knowledge base Accelerate the pace--and refine the design of -- intervention research to permit us to effectively and efficiently address survivors evolving posttreatment needs Design and evaluate care models that using information from the above science lead to improved length and quality of survival for all those diagnosed and treated for cancer Ensure we have a steady cadre of multidisciplinary researchers in the pipeline to help us conduct the needed science and clinicians trained to deliver high quality care.

27 Thank you! National Cancer Institute

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