Cancer Survivorship Care [Insert Presenter Name Insert Presenter Institution]

Objectives Define survivorship and describe the need for survivorship care Discuss the Commission on Cancer standards for implementing survivorship care planning Identify the key components of a cancer survivorship care List patient and health care professional educational resources

Survivorship What is survivorship? NCI definition Health and life of individual from end of treatment until the end of life Covers physical, psychosocial and economic issues Includes access to care and follow-up treatment, late and long-term effects of treatment, second cancers and quality of life Includes family, friends and caregivers The National Cancer Institute defines survivorship as: “the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience” NCI, 2014

The Need for Survivorship Care Rapidly growing population of survivors Survivors experience unmet physical, psychosocial, practical and spiritual needs Inconsistent coordination of care and communication between oncologists and primary care providers Significant long-term and late effects Complexity of care, co-morbid conditions According to the American Cancer Society’s Cancer Treatment & Survivorship Facts and Figures, there are approximately 14.5 million cancer survivors in the U.S. Survivors can experience a wide array of physical, psychological, social, practical and spiritual concerns that linger or show up long after treatment. There is high variability in the way health care services are delivered after cancer treatment and limited, inconsistent care coordination between oncologists and primary care providers. Often there is confusion about what each health care provider is responsible for in terms of health care for the cancer survivor. Sources: ACS Facts & Figures. http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf Smith, et al. (2008). Cancer, comorbidities, and health-related quality of life of older adults. Health Care Finance.

Cancer Survivor Needs Cancer impacts quality of life across these 4 major domains: physical well-being, psychological well-being, social well-being and spiritual well-being. These domains are all interrelated. For example, a survivor who fears recurrence may be less likely to seek treatment for physical issues, which may impact their social and spiritual well-being. Source: Ferrell & Grant, 2004. Ferrell & Grant, 2004, reproduced with permission in the American Cancer Society’s Cancer Treatment & Survivorship Facts & Figures, 2012 5

Long-term side effects Common Long-Term / Late Effects by Treatment Type Treatment Long-term side effects Late side effects Chemotherapy Fatigue Premature menopause Sexual dysfunction Neuropathy “Chemo brain” Kidney failure Vision/cataracts Infertility Liver problems Lung disease Osteoporosis Reduced lung capacity Second primary cancers Radiation therapy Fatigue Skin sensitivity Lymphedema Cataracts Cavities and tooth decay Cardiovascular disease Hypothyroidism Infertility Lung disease Intestinal problems Second primary cancers Surgery Sexual dysfunction Incontinence Pain Body image disturbance Functional disability Infertility Cancer can have long-term and late effects. These are just some of the physical impacts that cancer might have on a patient. Data currently isn’t available to predict who will experience which effects and when. Nonetheless, these effects need to be managed. The most common impacts of cancer include: Fatigue Memory Issues Lymphedema Peripheral Neuropathy Musculo-Skeletal Issues Source: http://www.mayoclinic.com/health/cancer-survivor/CA00073 IOM , 2006, Mayoclinic.com 6

Cancer and Comorbidities Osteoporosis Cancer Psychosocial Stress (anxiety, depression, insomnia, cognitive deficiency) Diabetes Heart Disease, Hypertension, Stroke Arthritis Emphysema, Asthma, COPD Overweight / Obesity Cancer survivors face comorbidities in addition to cancer. 70% of cancer survivors report at least one comorbid condition. For cancer survivors age 65 or over, this increases to 85%. In some cases the factor contributing to their cancer (smoking, obesity) can contribute to comorbid disorders (heart disease). Sources: Smith, et al. (2008). Cancer, comorbidities, and health-related quality of life of older adults. Health Care Finance. IOM Cancer Patient to Cancer Survivor Report, page 41. Smith et al, 2008. 7

Psychosocial Late Effects While only a significant minority of cancer survivors will meet criteria for a mental health disorder, the majority of survivors will experience psychosocial distress at a level that is significant, but does not meet criteria for a psychiatric disorder (Read slide) Psychosocial Late Effects include: Fear of recurrence Depression Anxiety Personal appearance concerns Altered relationships, lack of support Distress: emotional, financial, spiritual Concern about family member risk Reduced income Outstanding medical costs School issues Insurance Source: NCCN practice guidelines for the management of psychosocial distress. National Comprehensive Cancer Network. Oncology (Williston Park) 1999;13:113–147.

Institute of Medicine Report In 2006, the IOM issued a groundbreaking report that described core components of survivorship care and recommended a treatment summary and follow up care plan be given to every cancer patient. Also, the plan should be clearly explained. In 2006, the Institute of Medicine issued a report recommending that a treatment summary and follow up care plan be given to every cancer patient and that it should be explained to that patient. Source: Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C. (p. 151). IOM, 2006.

CoC Standard 3.3: Survivorship Care Plan Contact info of treating institutions/providers Diagnosis, stage Treatment modality and details Need for adjuvant therapy and details Long-term and late effects Schedule of follow up visits, tests & screening Information on emotional health & physical wellness This CoC standard requires that cancer survivors be "provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained" however, debate remains on what data fields should populate such a document. The American Society of Clinical Oncology has established minimal elements that should be included. These include contact information for providers, diagnosis, staging and treatment information, long term and late effects information, schedule of follow up and health promotion. In 2015, 10% of survivors treated with curative intent must receive a plan with 100% receiving plans by 2019 – this is a requirement to remain CoC accredited.

Survivorship Care Plans Here is an example of a survivorship care plan. This slide shows the ASCO Treatment Summary and Survivorship Care Plan. This is the revised plan they recently released to be more user and patient friendly. The plan should include: Diagnostic tests and results Tumor characteristics Dates of treatment initiation and completion All treatment, including agents used, regimen, total dosage, response, toxicities Psychosocial and other supportive services provided Full contact information for treating institutions Key point of contact for coordinating care Source: ASCO-Survivorship-Care-Plan.pdf © American Society of Clinical Oncology Used with permission Source: http://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans

Other publicly available survivorship care plans are the Journey Forward and the LIVESTRONG care plans. There are also commercially plans available, and some institutions have homegrown plans. Sources: http://www.journeyforward.org/ http://www.yikesinc.com/portfolio-items/livestrong-care-plan/ Journey Forward; www.journeyforward.org LIVESTRONGTM Care Plan, www.livestrongcareplan.org Equicare CS software; www.equicarehealth.com Passport for Care http://www.txch.org/passportforcare/ Institutional templates (often shared upon request) Source: LIVESTRONG Foundation: www.LIVESTRONG.org

Basic Elements of Survivorship Care Prevention of cancer and late effects Surveillance for recurrence screening for new cancers Identification of interventions for consequences of cancer and its treatment Coordination between oncology specialists and primary care providers The CoC standard for survivorship care plans ideally fits within a larger context of cancer survivorship care. The Institute of Medicine described these core components for survivorship care. (Read slide) IOM, 2006

Importance of Follow Up Care Prostate Exams Lipid checks Colonoscopy Blood sugar check Mammograms Blood pressure Pap smear Vaccinations Skin checks Bone density checks Lung screening (if indicated) Weight check Thyroid exam Distress screening It is also important to keep in mind that cancer survivors may be focused on their cancer experience and may be overdue for routine health maintenance checks. It is important that survivors receive ongoing preventive care and screenings with attention to heightened risks for comorbidities, second cancers and psychosocial impacts. This slide shows some of the things a patient might need to pay attention to in addition to their treatment and cancer-related follow up.

LIVESTRONG Essential Elements LIVESTRONG conducted a consensus meeting to articulate Essential Elements of Survivorship Care. This chart summarizes the care medical settings must provide, should provide, and should strive to provide in survivorship care according to that consensus meeting. Source: Rechis R, Beckjord E, Arvey, S., Reynolds, K. & McGoldrick, D. (2011).The Essential Elements of Survivorship Care: A LIVESTRONG Brief. Source: LIVESTRONG Foundation: www.LIVESTRONG.org

Patient Education Resources With support from Susan G. Komen, the GW Cancer Institute created a presentation called “Treatment’s Over: Now What?” that can be shared with your patients. This brief educational presentation is available free of charge and online to help explain things a cancer survivor might need to know about transitioning from active cancer treatment to post-treatment health care.

Patient Education Resources The National Cancer Institute’s Facing Forward booklet covers information about follow-up medical care for survivors, management of physical changes, body changes and intimacy, emotions and social and work relationships. The booklet includes resources that can be helpful to survivors and their families.

Online Academy Executive Training on Navigation and Survivorship Covers the nuts and bolts of navigation and survivorship program development and implementation CE credits for nurses and social workers tinyurl.com/GWOnlineAcademy In December 2014, the GW Cancer Institute launched the online Executive Training on Navigation and Survivorship. This course is freely available online and covers the nuts and bolts of navigation and survivorship program development and implementation. The self-paced course has been approved for continuing education credits for nurses and social workers. As you can see on this screen the course walks the participant through program planning, funding, evaluating and writing a business plan. Each module remains locked until the content from the previous module has been completed. A competency-based Oncology Patient Navigation training is also available for oncology patient navigators to build core competencies in their field.

Cancer Survivorship E-Learning Series If you want to have more detailed education on the long-term and late effects of cancer, the importance of the multidisciplinary team and care coordination and specific guidelines for clinical care, check out the Cancer Survivorship e-Learning series available at www.cancersurvivorshipcentereducation.org. This free online series provides information on how to better care for cancer survivors and comes with 7 free CME hours.

Cancer Survivorship Clinical Practice Guidelines National Comprehensive Cancer Network By topic: anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function (female/male), sleep disorders American Society of Clinical Oncology By topic: neuropathy, fatigue, anxiety and depression, fertility preservation American Cancer Society Survivorship Care Guidelines for Primary Care Providers Holistic: Surveillance, screening, long term and late effects, health promotions Prostate currently available Breast, Colorectal, Head & Neck to be released in 2015 Cancer survivorship clinical practice guidelines are available from the Nat’l Comprehensive Cancer Network, the American Society of Clinical Oncology, and the American Cancer Society

References Commission on Cancer (CoC). Accreditation Committee Clarifications for Standard 3.3 Survivorship Care Plan, 2014. Ferrel B & Grant M. City of Hope, Beckman Research Institute, 2004. GW Cancer Institute. Breast Cancer Survivorship in Washington, DC: A Gap Analysis and Recommendations for Action. Unpublished Report, 2014a. GW Cancer Institute. Oncology Patient Navigator Core Competencies, 2014b. Institute of Medicine (IOM). From Cancer Patient to Cancer Survivor: Lost in Transition, 2006. LIVESTRONG Foundation. The Essential Elements of Survivorship Care: A LIVESTRONG Brief, 2011. Mayo Clinic. Cancer Survivors: Late Effects for Cancer Treatment. n.d. http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-survivor/art-20045524 National Cancer Institute. Facing Forward: Life After Cancer, 2014. Smith A et al. Cancer, Comorbidities and Health-Related Quality of Life of Older Adults. Health Care Finance Review, 2008.

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