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Semelhante a Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Semelhante a Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker (20)
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Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
- 1. Cancer Survivorship The Future is Now Memorial Sloan-Kettering Cancer Center Mary S. McCabe
- 2. Survivorship Care An International Endeavor
- 3. 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, 1975-2007, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010 Estimated Number of Cancer Survivors in the United States From 1971 to 2007
- 4. Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Site (N = 10.1 M)
- 5. Estimated Number of Cancer Survivors in the U.S. on January 1, 2004 by Current Age (Invasive/1st Primary Cases Only, N=10.8M survivors) Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.
- 6. Current Focus on Survivorship • Greater emphasis on patient-centered issues by the medical community- quantity AND quantity of life • Increasing expectations by patients for good quality of life • Rapid increase in the number of elderly Americans – By 2020, 1 in 6 Americans will be elderly • Cancer is seen as a chronic disease • Implementation of health care reform – Reassessment of our care delivery models in general – Focus on cost as it relates to quality
- 7. Survivorship Defined • Ideal – Individuals who are 5 or more years beyond diagnosis (Mullan) – Anyone who has been diagnosed with cancer through the balance of his or her life (NCCS) – Including friends, family members and caregivers (NCI) • Pragmatic – Period in which patients treated with curative intent have completed their initial therapy and require follow-up care (Ganz, 2006) – Period until recurrence, second cancer, or death and may include some ongoing treatment, such as hormonal therapy. (IOM, 2006)
- 8. Cancer and its Treatment Domains of Concern • Physical/medical – Organ toxicity and second cancers • Psychological – Fear of recurrence, anxiety and depression • Social – Changes in relationships, economic and education issues • Existential and spiritual – Loss or deepened meaning in life • Informational – Need for ongoing, comprehensive information
- 9. Cancer control continuum-revisited (Courtesy of the National Institutes of Health). Campo R A et al. Cancer Epidemiol Biomarkers Prev 2011;20:2317- 2324 ©2011 by American Association for Cancer Research
- 10. Late medical effects of treatment depend on the type of therapy . . . and the specific toxicities/organ interactions of each therapy Radiation Therapy Surgery Chemotherapy
- 11. Medical Challenges • Bone and soft tissue • Cardiovascular • Dental/oral • Endocrine • Gastrointestinal • Genitourinary • Hematologic • Hepatic • Immune system • Integumentary • Musculoskeletal • Nervous system • Neurocognitive • Pulmonary • Renal • Reproductive • Second malignancies
- 12. Physical Symptoms • Pain and discomfort • Cognitive changes • Bone health • Neuropathies • Fatigue and sleep-wake disturbances • Sexuality and reproductive issues • Reproductive hormonal imbalances Lester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 13. Psychological Challenges • Fear of recurrence • Depression/depressed mood • Anxiety • Post-traumatic stress syndrome (PTSD) • Body image disturbances • Changes in relationships
- 14. Practical Challenges • Personalization of information and care • Economic burden • Employment • Family and children-related issues Lester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 15. Listening to Survivors Lance Armstrong Foundation LIVESTRONG™ Poll n=1020 • Secondary Health Problems – 53% - secondary health problems • 54% - deal with chronic pain • 33% - infertility • Non-Medical Support – 49% - non-medical cancer needs were unmet – 53% - practical and emotional consequences of cancer are often harder than medical issues • Emotional Support – 70%- dealt with depression – 78% - did not seek professional services • Relationships – 58%- dealt with loss of sexual desire and/or sexual function
- 16. Listening to Survivors Lance Armstrong Foundation LIVESTRONG™ Poll n=1020 • Financial Problems – 43% - decreased income as a result of cancer – 25% - in debt as a result of treatment – 12% - turned down a treatment option because of cost • Job Issues – 32% - lack of advancement, demotion or job loss – 34% - trapped in job to preserve insurance coverage • As a result of cancer diagnosis: – Did not start participating in sports 86% – Did not move to a new location 86% – Did not make a career change 81% – Did not travel someplace special 71%
- 17. Listening to Survivors Information Needs • Cancer Survivors Study N=752 – 6 different cancer sites • Bladder, breast, colorectal, prostate, uterine, melanoma – 3-11 years post diagnosis – Information needs • Overall quality of information received – 38% rated the information provided as fair to poor • Information about long-term side effects – 36% rated the information provided as fair to poor Report from ACS Studies of Cancer Survivors, 2008
- 18. Cardiopulmonary Challenges • Damage can be caused by specific treatments • Long-term complications include - cardiomyopathy - pericarditis - congestive heart failure - valvular heart disease - premature coronary artery disease Smith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 19. Cardiopulmonary Education • Educate the survivor and PCP about risks • Educate about reportable symptoms – Weight gain – Peripheral edema – Shortness of breath – Dyspnea on exertion – Decreased activity tolerance – Extreme fatigue – Rapid or irregular heartbeat, palpitations – Wheezes Smith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 20. Bone Health • Common causes of bone loss that result in osteopenia and osteoporosis - aging - menopause - cancer treatment • Secondary causes - vitamin D deficiency • Risk factor – history of fractures Lustberg, M. & Shapiro, C. (2011). Optimizing bone health in adult cancer survivors. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 21. Common Concerns Among Cancer Survivors Cognitive Dysfunction Depression Insomnia Fatigue
- 22. Fatigue • Description – Reported by 60-110% of patients undergoing cancer treatment – 50% at diagnosis – Can have a long duration – Can impact quality fo life • Causes – Surgery, chemotherapy, radiation, or biological therapy – Other medications – Other medical conditions
- 23. Fatigue • Management – Get adequate sleep – Participate in physician approved exercise – Eat a healthy, well-balanced diet – Consider other health conditions • Underactive thyroid • Anemia • Anxiety • Depression
- 24. Fatigue & Sleep-Wake Disturbances • Overall, the most common symptom in cancer survivors • Can result in – lower physical, social, cognitive, & vocational functioning – adverse mood changes – emotional distress – amplification of current symptoms Berger, A. M. & Mitchell, S.A. (2011). Cancer-related fatigue and sleep-wake disturbances. dIn J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society. Bower, J.E. (2008). Behavioral symptoms in patients with breast cancer and survivors. Journal of Clinical Oncology, 26, 768-777/
- 25. Anxiety and Uncertainty • Common for all patients to experience anxiety with a cancer diagnosis • Incidence of chronic anxiety is at least 30% • Uncertainty is defined as - ambiguity - unpredictability - fluctuating course of disease - incomplete information and explanations - vague feedback about prognosis Maars, J.A. (2006). Stress, fears, and phobias: The impact of anxiety Clinical Journal of Oncology Nursing 10, 319-322. Sheldon, L.K. & Barnett, M. (2011). Anxiety and uncertainty. In J. Lester, & P Schmidt (Eds.) Cancer Rehabilitation and Survivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA: Oncology Nursing Society.
- 26. Cognitive Dysfunction • Chemotherapy related – Subjective and objective components • Impacts quality of life • Causes – Chemotherapy – Anxiety and depression – Fatigue – Age – Medications
- 27. Cognitive Dysfunction • Management – Management fatigue and sleep disturbances – Behavioral strategies • Improved organization • Lists • Work on puzzles – Several medications are being studied
- 28. Sexuality & Reproductive Issues Survivors report that insufficient and untimely information is given to them about sexual functioning Cancer survivors expect to return to a sense of self as a sexual person after treatment ends Survivors are desexualized by professionals Fertility issues are under-discussed & at wrong time Gallo-Silver, L., & Dillon, P.M. (2011). Klemanski, D. & Lester, J.L. (2011).Sexuality and reproductive issues. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
- 29. Spirituality Spirituality as a source of comfort – Important consideration in compassionate care – Patients rely on spiritual beliefs as a way of finding meaning – Addresses common human need for certainty Spirituality as a resource in survivorship – Perspectives in life are altered – Redefine meaning in life – Find hope and sense of well-being Fobair, P. (2011). Spirituality and cancer survivorship In J. Lester, & P Schmidt (Eds.) Cancer Rehabilitation and Survivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA: Oncology Nursing Society
- 30. Is There an Architect in the House?
- 31. National Direction for Cancer Survivorship Initiatives
- 32. Institute of Medicine Report • Establish survivorship as a distinct phase of care • Implement survivorship care plans • Build bridges between oncology and primary care • Develop and test models of care • Develop and evaluate clinical practice guidelines • Institute quality of survivorship measures • Strengthen professional education • Expand use of psychosocial and community support services • Invest in survivorship research Executive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National Academies Press; 2006.
- 33. Survivorship Care Usual Practice • Follow-up by oncologists is routine • Patients find it reassuring • Duration of follow-up is variable • Follow-up guidelines are limited and recent • Follow-up care focused on surveillance for recurrence • Limited transfer of knowledge and information to primary care provider
- 34. Long Term Follow-up Programs Rationale • A need to figure out how to care for the large number of individuals in follow-up – Who needs what, when and for how long • Greater understanding of the consequences of cancer and its treatment • Focus on the application of interventions to eliminate/reduce sequelae • Improved communication needed between clinicians
- 35. Renovations Come in All Sizes
- 36. Listening to Survivors • Consider – care/services that are organized around the needs and preferences of patients • Educate – survivors about the things they can actively do on their own – Provider groups about the long term and late effects of blood cancer treatments and their management • Encourage – survivors to be actively involved in their own care
- 37. Models of Care Providers • Physicians – Oncologist • Pediatric • Medical – Primary care • Nurses – Oncology experience – Non-oncology experience • Nurse practitioners/ physician assistants – Oncology expertise – Primary care expertise • Combined MD/NP team
- 38. Models of Care Clinical • Multidisciplinary – Pediatric setting • Disease/treatment specific – Large groups of patients or unique therapies, such as transplant • Consultative – One time visit that consolidates information about follow- up and a treatment summary/ care plan is provided • Integrated care – Ongoing follow-up with a focus on comprehensive survivorship services, usually by an NP or PA
- 39. Multidisciplinary Clinic •Patients seen/evaluated by different providers during one clinic visit •Oncology, endocrinology, neuropsychology, neurology, social work, etc. Advantages Challenges Common pediatric model Resource intense Easy for patients Difficult to coordinate Comprehensive Not everyone needs all services Good model for complex patient (brain tumors)
- 40. Disease/Treatment Specific Clinic •Survivorship clinic for specific disease category (breast) •Stem cell transplant patients frequently seen in separate clinic from general oncology •Can be developed for psychosocial services only Advantages Challenges Good way to begin Inequality Focused scope of practice Omit survivors with greatest needs Easier to develop consensus guidelines for follow-up Good model for complex patients
- 41. Consultative Service •One time consult visit to cover general survivorship issues and distribute treatment summary/care plan •Some may see annual returns •Referral to subspecialist, PT, nutrition, psych, etc •Establish primary care home for survivor Advantages Challenges Serves unrestricted survivor population, outside referrals Difficult to be “expert” in long term f/u issues for all diseases Provides core service, tx summary/care plan Difficult to have consensus guidelines for f/u for all Reinforces need for primary care f/u and transition out of cancer clinic setting Buy in from multiple different oncologist for patient referral difficult
- 42. Tool Kit Visit • Treatment summary and care plan • Cancer screening recommendations • Healthy living counseling – Smoking cessation – Diet – Exercise • Insurance, employment and financial information • Referral to rehabilitation and social services
- 43. Integrated Care Model •Survivorship visit imbedded in the oncology clinic where the patient was treated •Survivorship Nurse Practitioner •Ongoing care Advantages Challenges Easy transition for patients Requires busy clinical practice to justify Access to treatment history Patients may be reluctant to transition to primary care Works well for surveillance of recurrent/new cancer as well as for late effects
- 44. Shared-Care Model Components • Care shared by two or more clinicians of different specialties • Common understanding of expected components of care and respective roles • Knowledge transfer – Clinical summary • Specific information on disease • General information about treatment • Communication channels – Contact information for oncology physicians and nurses • Active patient involvement – Encouraged to contact primary care physician with problems – Provided with the information given to the primary care physician Renders et al: Diabet Med 20:846-852, 2003; Jones et al: Am J Kidney Dis 47: 103-114, 2006 Neilsen et al: Qual Saf Health Care 12(4) 263-272.
- 45. Cancer Survivorship It’s about Rehabilitation Physical Psychosocial Spiritual
- 47. Health Promotion • Diet • Exercise • Smoking Cessation
- 49. New York Times Blog Life Interrupted, Suleika Jaouad • “On the rare occasions I initiated the conversation myself, talking about sex and cancer felt like a shameful secret.” • A friend describes “her oncologist’s visible discomfort when she asked him about safe birth control methods.” • “The way women with cancer are being educated about their sexual health is not by their health care providers but on their own.”
- 50. Fertility Preservation Program Structure Patients informed and referred if interested Resources for patients Resources for clinicians Education of clinicians Clinical Nurse Specialist
- 52. Journey Forward: Supporting Survivors and Providers
- 55. FROM OUR SURVIVORSHIP EXPERTS Video presentations featuring MSKCC survivorship experts- physicians, nurses, social workers, psychologists, and physical therapists – address a range of physical, social, practical and personal concerns faced by cancer survivors. These videos are available free of charge on MSKCC’s Living Beyond Cancer Web Site (www.mskcc.org/ptrpwebcasts), the MSKCC Survivorship YouTube Chanel and the iTunes MSKCC Survivorship Podcast station. CURRENT PRESENTATIONS INCLUDE: Day-to-Day Coping with Lymphedema The Importance of Exercise in Cancer Survivorship Why Don't They Hear Me? Communicating with Friends and Family After Treatment Ends SOON TO COME: Changes in Thinking and Memory by Tim Ahles, PhD Coping and Survivorship by Jimmie Holland, MD
- 58. We’re All in This Together