Cancer Survivorship: Its scope and our obligations

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2 Cancer Survivorship: Its scope and our obligations Louis S. Constine, MD, FASTRO Philip Rubin Professor, Radiation Oncology and Pediatrics Director, Judy DiMarzo Cancer Survivorship Program Vice Chair, Radiation Oncology

3 In the spirit of being officious Please silence cell phones and pagers Up to 6.0 AMA PRA Category 1 Credits can be claimed commensurate with participation Social Work credit has been approved at 6.0 Please complete the online program evaluation by 2/13/16 Huge thanks to the Center for Experiential Learning

4 I don t necessarily agree with everything I say -- Marshall McLuhan

5 Survivorship begins at diagnosis! Cancer Diagnosis & Treatment Health & Quality of Life Long-Term Survival

6 Cancer Care Trajectory Cancer-Free Survival Start Here Treatment t With Intent to Cure Managed Chronic or Intermittent Disease Recurrence/ Second Cancer Diagnosis and Staging Palliative Treatment Treatment Failure Survivorship Research & Survivorship Care Death IOM, 2005

7 Who is a Cancer Survivor? IOM: from the time of diagnosis through the balance of his/her life ACS/CoC Accreditation Committee Standard 3.3: subset treated with curative intent, and who have completed active therapy (other than long-term hormonal therapy)

8 Cancer Incidence Distribution by Site SEER Program, 2008 Multiple primary cancers Prostate Breast Lung and bronchus Colon /rectum Urinary bladder Melanomas of the skin Non-Hodgkin lymphoma Uterine corpus Kidney Pancreas Ovary Thyroid Stomach Brain & CNS Multiple myeloma Cervix Esophagus Liver Larynx Hodgkin lymphoma Testis Soft tissue including heart Bone and joint 3.30% 3.70% 3.50% 2.50% 2.30% 2.10% 1.30% 2.20% 1.30% 1.20% 1.00% 0.70% 0.80% 1.20% 0.60% 0.60% 0.60% 0.50% 0.20% 7.90% 9.80% 12.20% 14.60% 17.70% Total invasive cancers: 129,552 Percent

9 In patients diagnosed with cancer before age 15, the 5-year survival rate improved from 58% in 1975 to >80% in an average annual change of 1.68%

10 Less well known is the remarkable improvement in prolonging survival in adult patients, especially those between 50 and 80 years of age

11 5-Year Survival of Patients with Cancer by Era, SEER, Survival (%) Peak to Valley Transformation Age at Diagnosis (Years) Year of Diagnosis 2004 Projected

12 Estimated Number of Cancer Survivors in the United States Over Time

13 13.7 Million Cancer Survivors United States: 2012 Female Breast 22% Prostate 20% Colorectal 13% Lung 3% Melanoma 7% Hematologic 6% GU 4% GYN 5% de Moor JS, et al. Cancer Epidemiol Biomarkers Prev. 2013;22:

14 Cancer Survivorship: 2012 U.S.: 13.7 million cancer survivors 4% of population 18 million by 2022 Increases in cancer survival are due to Earlier diagnosis (screening) More effective treatment Better supportive care Siegel R, et al. Cancer Treatment and Survivorship Statistics, Ca Cancer J Clin 2012;62:

15 Pal & Hurria, JCO, 2010 Aging & the Cancer Epidemic

16 Cancer Survivors Risk of Health Outcomes Genetic Factors Lifestyle Behaviors Comorbidities Exposures Surgery Chemotherapy Radiation Long Term and Late Effects

17 Post Treatment Reality Survivors more likely to have comorbidities» Multiple comorbidities common» Report poorer health outcomes and need for help with ADLs» Consistent across time, including long term survivors» Most common comorbidities: Musculoskeletal, HTN, & pulmonary Survivors more likely to die of non cancer causes» Leading causes of death are cardiovascular and respiratory disease» Excess deaths especially high within 5 years of diagnosis

18 Post Treatment Reality Survivors more likely to develop a second primary cancer» Majority of new cancers arose in a separate organ system» Smoking and alcohol intake accounted for 35% of excess cancers» Lifestyle risk factors (e.g., weight, physical activity) also contribute Yabroff KR,et al. J Natl Cancer Inst. 2004;96(17): Brown BW, et al. J Natl Cancer Inst. 1993;85(12): Curtis RE, et al. New Malignancies Among Cancer Survivors: SEER Cancer Registries, Retrieved from

19 Morbidity in Cancer Survivors National Health Interview Survey: morbidity* 30% - fair or poor health 17% - unable to work because of health problems 58% - one or more functional limitations *Hewitt M, et al. J Gerontol 2003;58:82 91.

20 Health Status is Significantly Poorer in Cancer Survivors Cancer Survivors (N=1817) Non-cancer Controls (N=5465) Excellent Very Good Good Fair Poor Excellent Very Good Good Fair Poor 31% Fair & Poor 18% Fair & Poor P<.001 Yabroff et al, JNCI 2004

21 Number of Comorbid Conditions Burden of Illness is Greater % Ca Surv Non-cancer P< >= 3 Yabroff et al, JNCI 2004

22 Yabroff et al, JNCI 2004 Comorbid Conditions Causing Limitations in Cancer Survivors

23 Cancer Survivors Need More Help with Activities of Daily Living (ADLs) Cancer Survivors N=1817 Non-cancer Controls N=5465 P-value Needs help with 11.4% 6.5% <.001 instrumental ADLs Any limitation in any way 36.2% 23.8% <.001 Needs help with ADLs 4.9% 3.0%.003 Yabroff et al, JNCI 2004

24 Cancer Survivors Economic Burden 2010 to 2020 Cost of cancer care will increase 27% 1-year survivors annual health care expenditures Double that of general population Cost in continuing phase of care 1+ year from diagnosis but > 1 year from death -- Breast cancer: 42% increase -- Prostate cancer: 32% increase Mariotto AB, et al. J Natl Cancer Inst. 2011;103:

25 ACS COC* Accreditation Committee Standard 3.3 Timeline 1/1/15: Implement a pilot survivorship care plan process involving 10% of eligible patients 1/1/16: Provide SCPs to 25% of eligible patients 1/1/17: Provide SCPs to 50% of eligible patients 1/1/18: Provide SCPs to 75% of eligible patients 1/1/19: Provide SCPs to all eligible patients *American College of Surgeons Commission on Cancer Accreditation Committee Standard 3.3

26 Essential Components Of Survivorship Care Education of the cancer survivor, family, health care providers Plan for care based on the treatment and future health risks Promotion of healthy lifestyles Information to assist health care providers in understanding future risks Surveillance for cancer spread, recurrence, or second cancers and for long-term adverse physical, psychosocial, socioeconomic effects Intervention to prevent or treat consequences of cancer or its therapy Communication between specialists and primary care providers to ensure that the survivor s health needs are met Research focused on understanding, preventing, treating adverse consequences of cancer or its therapy Patient advocacy to address problems related to employment, insurance, and disability

27 After cancer treatment every patient should receive a Treatment Summary including: Contact information for each treating institution and key individual providers Specific diagnosis including stage Dates (years) of treatment initiation and completion Therapies provided, including specific agents, title of clinical trials (if any), treatment response, and toxicities experienced Ongoing toxicity or side-effects of treatments Predisposing conditions and (genetic) risk factors

28 After cancer treatment every patient and health care provider should receive a Follow-up Care Plan Including: Need for ongoing adjuvant therapy (type, duration) Recommended periodic testing and examinations by whom, where, and on what schedule Possible long-term effects of treatment including occurrence of new primary cancers Possible signs of recurrence and late effects Possible effects on daily life (personal relationships, work, mental health) and available resources Potential insurance, employment, and financial consequences of cancer and referrals to counseling, legal aid, and financial assistance if needed

29 This Follow-up Care Plan also includes: Recommendations for healthy behaviors Information on genetic counseling and testing to identify highrisk individuals Information on known effective chemoprevention strategies for secondary prevention (e.g., tamoxifen for breast cancer; aspirin for colorectal cancer) Referrals to specific follow-up care providers A listing of cancer-related print or online information resources and support organizations

30 Barriers to survivorship care Time required to complete a TS/SCP. Agreement on who will complete TS/SCT Inadequate reimbursement for time/resources Challenges in coordinating care Incomplete penetration of EHR systems to facilitate SCP completion Lack of data confirming outcome advantage

31 Physician-reported Provision and Receipt of Treatment Summaries and Survivorship Care Plans Weighted % of Physicians P=.001 P<.001 Forsythe et al, JNCI 105:1579, 2013

32 Physicians Reporting Discussion of Survivorship Care and Provision of Care Plans to Survivors Blanch-Hartigan et al, JCO 32:1578, 2014

33 Who is Caring for Adult Cancer Survivors? N = 851 Are you comfortable providing ongoing care to survivors? Yes 512 (61.2%) No 213 (25.5%) Do not provide 111 (13.3%) ASCO Prevention Survey, 2004

34 Survivorship Program Components Across Four Health Care Organizations Organization Type Survivorship Program Providers Partnerships Academic medical center In-person clinical evaluation with multidisciplinary team Medical oncologist, nurse practitioner, psychologist, social worker Faculty practice medical group Community hospital County hospital Primary-care medical group Nurse-led, telephone-based program; survivors also receive mailings and follow- up calls Nurse-practitioner led clinical program; survivors assessed, followed and primary care needs addressed Social worker led, telephonebased program; survivors also receive mailings and follow-up calls Oncology-certified registered nurse Nurse practitioner Licensed clinical social worker Local physicianowned oncology network In-house Navigation Program Oncology medical groups contracted to provide services to plan members

35 Preferred Model For Cancer Follow-up Care Potosky et al. J Gen Intern Med, online: July 22, 2011

36 Survivorship Program Website 36

37 Our Program Goal To provide comprehensive care of the highest order for cancer survivors in the greater Rochester area by navigating patients through the complexities of survivorship care 37

38 Program Components Treatment Summary at therapy completion Survivorship Care Plan at therapy completion and at f/u discharge Evidence-based Comprehensive Interdisciplinary Surveillance Services to heighten post-treatment quality of life Creating a support network Facilitate transition to primary care provider Identify research needs 38

39 Survivorship Visits Disease specific Led by NPs / PAs & RNs within each specialty Available to current JPWCI patients at all centers Primary attending refers patient at treatment completion Patients are again seen prior to discharge from oncology follow up Treatment Summary & Survivorship Care Plan reviewed at this visit Copies to patient, PCP, MyChart Address patient / family needs, concerns Collaborate with PCP & other providers for care 39 continuity

40 Individualized Resources / Referrals Specialists to address health problems due to therapy or disease process Physical & Occupational Therapy / Speech Therapy Nutritional Support Exercise Financial Support (insurance counseling, available resources) Genetic Counseling Emotional/Mental health; Family/Relationship Counseling Spirituality Smoking Cessation 40

41 Transition to Primary Care Provider Forms forwarded to PCP with letter explaining purpose of program, visit, & forms Contact information provided Routine preventative care noted Immunizations, routine surveillance (mammograms, colonoscopies, etc.) Creates early communication of long term needs for patients who will be discharged from oncology care in future 41

42 Paradigm of Care Cancer Diagnosis Primary Interventions Risk-adapted therapy considering cancer- and host-related factors Long-Term Survival Secondary Interventions Health education Cancer screening Risk-reducing interventions Pediatric Health Care Adult Health Care Survivor Health & QoL

43 What are the physical costs of survivorship?

44 General Considerations Risk of late effects depends on the tissue and age of patient at time of treatment Late effects are dose and modality specific (e.g., surgery, radiation, chemotherapy) Combined modality therapy can have additive risks

45 Late medical effects of treatment depend on the type of therapy... Surgery Radiation Therapy and the specific toxicities/organ interactions of each therapy Chemotherapy

46 Tissues at Risk for Late Toxicity Bone/soft tissues Cardiovascular Dental Endocrine Gastrointestinal Hepatic Hematological Immune system Nervous system Neuropsychologic Ophthalmologic Pulmonary Renal Reproductive

47 Survivorship begins at diagnosis! Cancer Diagnosis & Treatment Health & Quality of Life Long-Term Survival

48 As we know, there are known knowns. There are things we know we know. We also know there are known unknowns.» Donald Rumsfeld

49 Factors Contributing to Morbidity Host Factors Premorbid Conditions Genetic Health Behaviors Tobacco Diet Alcohol Exercise Sun Age Gender Race Aging Cancer-Related Morbidity Treatment Events BRCA, ATM, p53 polymorphisms Treatment Factors Surgery Chemotherapy Radiation therapy Tumor Factors Histology Site Biology Response

50 Habits that affect risk Smoking Sun exposure Diet Physical activity Alcohol intake

51 Tobacco Use Don t smoke. If you do smoke, QUIT! Don t use any tobacco products Avoid smoke-filled rooms Exercise regularly to keep your lungs fit Check out: SJ.QUIT

52 Preventing Skin Cancer Do not tan. When outdoors, stay in the shade. Limit sun exposure from Practice sun protection measures. Sunscreen Apply frequently! Wide brim hat Long-sleeve shirt Sun glasses with UV absorption

53 A Healthy Diet Eat a variety of healthful foods, with an emphasis on plant sources Eat > 5 vegetables and fruits servings each day. Choose whole, rather than processed, grains Limit consumption of red meats Choose foods to maintain a healthful weight Check out:

54 Physical Activity and Weight Adopt a physically active lifestyle Moderate activity for > 30 minutes on > 5 days Moderate-to-vigorous activity for > 45 minutes on > 5 days may further reduce breast and colon cancer risks Balance caloric intake with physical activity Check out:

55 Essential Elements Hierarchy of Patient Needs in Cancer Survivorship Fertility, integrative medicine, family adjustment after cancer Nutrition, exercise, support groups, pain management Insurance and financial resources, genetic counseling, sexual health Employment counseling, smoking cessation, coping after cancer Follow-up plan/appointment schedule, monitoring plan (scans and blood tests), information about short- and long-term adverse effects, detailed treatment summary, and strategies to cope with the fear of recurrence Boyajian RN, et al, J Oncol Prac. 10:294, 2014

56 Components of Cancer Survivorship Care Cancer Survivorship Care Non-Cancer Related Medical Care - Disease prevention/vaccination - Chronic care (i.e. DM, CAD) - Unrelated cancer screening Cancer Related Medical Care - Surveillance for recurrence - Complications of treatment - Related cancer screening Psychosocial Issues - Quality of life, financial burden - Family/genetic counseling Coordination of Care L Nekhlyudov, Livestrong Surviroship Center of Excellence Network

57 We Are Working Hard:»To cure patients with cancer»to minimize late effects»to inform patients of their past, present, and future»to partner with their care-takers And we are making progress!

58 Guidance for Cancer Survivorship Initiatives Guidance for Cancer Survivorship Initiatives

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