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Cancer SurvivorshipThe Future is NowMemorial Sloan-Kettering Cancer CenterMary S. McCabe
Survivorship CareAn International Endeavor
Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, ChoH, Ma...
Estimated Number of Persons Alive in the U.S.Diagnosed With Cancer by Site (N = 10.1 M)
Estimated Number of Cancer Survivors in the U.S.on January 1, 2004 by Current Age(Invasive/1st Primary Cases Only, N=10.8M...
Current Focus on Survivorship• Greater emphasis on patient-centered issues by themedical community- quantity AND quantity ...
Survivorship Defined• Ideal– Individuals who are 5 or more years beyond diagnosis (Mullan)– Anyone who has been diagnosed ...
Cancer and its TreatmentDomains of Concern• Physical/medical– Organ toxicity and second cancers• Psychological– Fear of re...
Cancer control continuum-revisited (Courtesy of the National Institutes of Health).Campo R A et al. Cancer Epidemiol Bioma...
Late medical effects oftreatment dependon the type oftherapy . . .and the specifictoxicities/organinteractions of each the...
Medical Challenges• Bone and soft tissue• Cardiovascular• Dental/oral• Endocrine• Gastrointestinal• Genitourinary• Hematol...
Physical Symptoms• Pain and discomfort• Cognitive changes• Bone health• Neuropathies• Fatigue and sleep-wake disturbances•...
Psychological Challenges• Fear of recurrence• Depression/depressed mood• Anxiety• Post-traumatic stress syndrome (PTSD)• B...
Practical Challenges• Personalization of information and care• Economic burden• Employment• Family and children-related is...
Listening to SurvivorsLance Armstrong Foundation LIVESTRONG™ Poll n=1020• Secondary Health Problems– 53% - secondary healt...
Listening to SurvivorsLance Armstrong Foundation LIVESTRONG™ Poll n=1020• Financial Problems– 43% - decreased income as a ...
Listening to SurvivorsInformation Needs• Cancer Survivors Study N=752– 6 different cancer sites• Bladder, breast, colorect...
Cardiopulmonary Challenges• Damage can be caused by specific treatments• Long-term complications include- cardiomyopathy- ...
Cardiopulmonary Education• Educate the survivor and PCP about risks• Educate about reportable symptoms– Weight gain– Perip...
Bone Health• Common causes of bone loss that result inosteopenia and osteoporosis- aging- menopause- cancer treatment• Sec...
Common Concerns Among CancerSurvivorsCognitiveDysfunctionDepressionInsomniaFatigue
Fatigue• Description– Reported by 60-110% of patients undergoing cancertreatment– 50% at diagnosis– Can have a long durati...
Fatigue• Management– Get adequate sleep– Participate in physician approved exercise– Eat a healthy, well-balanced diet– Co...
Fatigue & Sleep-Wake Disturbances• Overall, the most common symptom in cancersurvivors• Can result in– lower physical, soc...
Anxiety and Uncertainty• Common for all patients to experience anxiety with acancer diagnosis• Incidence of chronic anxiet...
Cognitive Dysfunction• Chemotherapy related– Subjective and objectivecomponents• Impacts quality of life• Causes– Chemothe...
Cognitive Dysfunction• Management– Management fatigue and sleep disturbances– Behavioral strategies• Improved organization...
Sexuality & Reproductive IssuesSurvivors report that insufficient and untimely information is given tothem about sexual fu...
SpiritualitySpirituality as a source of comfort– Important consideration in compassionate care– Patients rely on spiritual...
Is There an Architect in the House?
National Direction forCancer Survivorship Initiatives
Institute of Medicine Report• Establish survivorship as a distinct phase of care• Implement survivorship care plans• Build...
Survivorship CareUsual Practice• Follow-up by oncologists is routine• Patients find it reassuring• Duration of follow-up i...
Long Term Follow-up ProgramsRationale• A need to figure out how to care for the largenumber of individuals in follow-up– W...
Renovations Come in All Sizes
Listening to Survivors• Consider– care/services that are organizedaround the needs andpreferences of patients• Educate– su...
Models of CareProviders• Physicians– Oncologist• Pediatric• Medical– Primary care• Nurses– Oncology experience– Non-oncolo...
Models of CareClinical• Multidisciplinary– Pediatric setting• Disease/treatment specific– Large groups of patients or uniq...
Multidisciplinary Clinic•Patients seen/evaluated by different providers during oneclinic visit•Oncology, endocrinology, ne...
Disease/Treatment Specific Clinic•Survivorship clinic for specific disease category (breast)•Stem cell transplant patients...
Consultative Service•One time consult visit to cover general survivorship issues and distributetreatment summary/care plan...
Tool Kit Visit• Treatment summary and care plan• Cancer screening recommendations• Healthy living counseling– Smoking cess...
Integrated Care Model•Survivorship visit imbedded in the oncology clinic where thepatient was treated•Survivorship Nurse P...
Shared-Care ModelComponents• Care shared by two or more clinicians of different specialties• Common understanding of expec...
Cancer SurvivorshipIt’s about RehabilitationPhysicalPsychosocialSpiritual
SurvivorshipServicesPsychosocialCounselingPhysicalTherapyIntegrativeMedicineSupportGroupsSmokingCessationFertilityPreserva...
Health Promotion• Diet• Exercise• Smoking Cessation
New York Times BlogLife Interrupted, Suleika Jaouad• “On the rare occasions I initiatedthe conversation myself, talkingabo...
Fertility Preservation ProgramStructurePatientsinformedandreferred ifinterestedResourcesforpatientsResourcesforcliniciansE...
Journey Forward: Supporting Survivorsand Providers
FROM OUR SURVIVORSHIP EXPERTSVideo presentations featuring MSKCC survivorship experts- physicians, nurses, social workers,...
We’re All in This Together
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker
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Jefferson University Hospitals' April 2013 Cancer Survivorship Conference Presentation: Keynote Speaker

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At Jefferson University Hospitals' Cancer Survivorship Conference on April 12, 2013, Mary McCabe of Memorial Sloan-Kettering Cancer Center gave the keynote address. Jefferson's new Survivorship platform includes biannual conferences featuring keynote speakers and several breakout sessions to give cancer patients, survivors and caregivers a better understanding of survivorship and what comes next after a cancer diagnosis. This is a free event open to all cancer patients and survivors. Learn more: http://www.jeffersonhospital.org/departments-and-services/kimmel-cancer-center/cancer-survivorship-program

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  1. 1. Cancer SurvivorshipThe Future is NowMemorial Sloan-Kettering Cancer CenterMary S. McCabe
  2. 2. Survivorship CareAn International Endeavor
  3. 3. Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, ChoH, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer StatisticsReview, 1975-2007, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November2009 SEER data submission, posted to the SEER web site, 2010Estimated Number of Cancer Survivors inthe United States From 1971 to 2007
  4. 4. Estimated Number of Persons Alive in the U.S.Diagnosed With Cancer by Site (N = 10.1 M)
  5. 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, EisnerMP, 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 website, 2007.
  6. 6. Current Focus on Survivorship• Greater emphasis on patient-centered issues by themedical community- quantity AND quantity of life• Increasing expectations by patients for good quality oflife• 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. 7. Survivorship Defined• Ideal– Individuals who are 5 or more years beyond diagnosis (Mullan)– Anyone who has been diagnosed with cancer through the balance ofhis or her life (NCCS)– Including friends, family members and caregivers (NCI)• Pragmatic– Period in which patients treated with curative intent have completedtheir initial therapy and require follow-up care (Ganz, 2006)– Period until recurrence, second cancer, or death and may includesome ongoing treatment, such as hormonal therapy. (IOM, 2006)
  8. 8. Cancer and its TreatmentDomains 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. 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. 10. Late medical effects oftreatment dependon the type oftherapy . . .and the specifictoxicities/organinteractions of each therapyRadiationTherapySurgeryChemotherapy
  11. 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. 12. Physical Symptoms• Pain and discomfort• Cognitive changes• Bone health• Neuropathies• Fatigue and sleep-wake disturbances• Sexuality and reproductive issues• Reproductive hormonal imbalancesLester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinaryapproaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
  13. 13. Psychological Challenges• Fear of recurrence• Depression/depressed mood• Anxiety• Post-traumatic stress syndrome (PTSD)• Body image disturbances• Changes in relationships
  14. 14. Practical Challenges• Personalization of information and care• Economic burden• Employment• Family and children-related issuesLester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care.Pittsburgh, PA: Oncology Nursing Society.
  15. 15. Listening to SurvivorsLance 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 oftenharder 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. 16. Listening to SurvivorsLance 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. 17. Listening to SurvivorsInformation 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 poorReport from ACS Studies of Cancer Survivors, 2008
  18. 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 diseaseSmith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation andsurvivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.
  19. 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– WheezesSmith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancerrehabilitation and survivorship: Transdisciplinary approaches to personalized care.Pittsburgh, PA: Oncology Nursing Society.
  20. 20. Bone Health• Common causes of bone loss that result inosteopenia and osteoporosis- aging- menopause- cancer treatment• Secondary causes- vitamin D deficiency• Risk factor – history of fracturesLustberg, 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. 21. Common Concerns Among CancerSurvivorsCognitiveDysfunctionDepressionInsomniaFatigue
  22. 22. Fatigue• Description– Reported by 60-110% of patients undergoing cancertreatment– 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. 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. 24. Fatigue & Sleep-Wake Disturbances• Overall, the most common symptom in cancersurvivors• Can result in– lower physical, social, cognitive, & vocationalfunctioning– adverse mood changes– emotional distress– amplification of current symptomsBerger, 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 topersonalized care. Pittsburgh, PA: Oncology Nursing Society.Bower, J.E. (2008). Behavioral symptoms in patients with breast cancer and survivors. Journal of ClinicalOncology, 26, 768-777/
  25. 25. Anxiety and Uncertainty• Common for all patients to experience anxiety with acancer diagnosis• Incidence of chronic anxiety is at least30%• Uncertainty is defined as- ambiguity- unpredictability- fluctuating course of disease- incomplete information and explanations- vague feedback about prognosisMaars, 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.) CancerRehabilitation and Survivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA:Oncology Nursing Society.
  26. 26. Cognitive Dysfunction• Chemotherapy related– Subjective and objectivecomponents• Impacts quality of life• Causes– Chemotherapy– Anxiety and depression– Fatigue– Age– Medications
  27. 27. Cognitive Dysfunction• Management– Management fatigue and sleep disturbances– Behavioral strategies• Improved organization• Lists• Work on puzzles– Several medications are being studied
  28. 28. Sexuality & Reproductive IssuesSurvivors report that insufficient and untimely information is given tothem about sexual functioningCancer survivors expect to return to a sense of self as a sexual personafter treatment endsSurvivors are desexualized by professionalsFertility issues are under-discussed & at wrong timeGallo-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. 29. SpiritualitySpirituality as a source of comfort– Important consideration in compassionate care– Patients rely on spiritual beliefs as a way of findingmeaning– Addresses common human need for certaintySpirituality as a resource in survivorship– Perspectives in life are altered– Redefine meaning in life– Find hope and sense of well-beingFobair, P. (2011). Spirituality and cancer survivorship In J. Lester, & P Schmidt (Eds.) Cancer Rehabilitation andSurvivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA: Oncology Nursing Society
  30. 30. Is There an Architect in the House?
  31. 31. National Direction forCancer Survivorship Initiatives
  32. 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 researchExecutive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The NationalAcademies Press; 2006.
  33. 33. Survivorship CareUsual 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 forrecurrence• Limited transfer of knowledge and informationto primary care provider
  34. 34. Long Term Follow-up ProgramsRationale• A need to figure out how to care for the largenumber of individuals in follow-up– Who needs what, when and for how long• Greater understanding of the consequences ofcancer and its treatment• Focus on the application of interventions toeliminate/reduce sequelae• Improved communication needed between clinicians
  35. 35. Renovations Come in All Sizes
  36. 36. Listening to Survivors• Consider– care/services that are organizedaround the needs andpreferences of patients• Educate– survivors about the things theycan actively do on their own– Provider groups about the longterm and late effects of bloodcancer treatments and theirmanagement• Encourage– survivors to be actively involvedin their own care
  37. 37. Models of CareProviders• 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. 38. Models of CareClinical• Multidisciplinary– Pediatric setting• Disease/treatment specific– Large groups of patients or unique therapies, such astransplant• 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 comprehensivesurvivorship services, usually by an NP or PA
  39. 39. Multidisciplinary Clinic•Patients seen/evaluated by different providers during oneclinic visit•Oncology, endocrinology, neuropsychology, neurology, socialwork, etc.Advantages ChallengesCommon pediatric model Resource intenseEasy for patients Difficult to coordinateComprehensive Not everyone needs all servicesGood model for complex patient(brain tumors)
  40. 40. Disease/Treatment Specific Clinic•Survivorship clinic for specific disease category (breast)•Stem cell transplant patients frequently seen in separateclinic from general oncology•Can be developed for psychosocial services onlyAdvantages ChallengesGood way to begin InequalityFocused scope of practice Omit survivors with greatest needsEasier to develop consensusguidelines for follow-upGood model for complex patients
  41. 41. Consultative Service•One time consult visit to cover general survivorship issues and distributetreatment summary/care plan•Some may see annual returns•Referral to subspecialist, PT, nutrition, psych, etc•Establish primary care home for survivorAdvantages ChallengesServes unrestricted survivorpopulation, outside referralsDifficult to be “expert” in long termf/u issues for all diseasesProvides core service, txsummary/care planDifficult to have consensusguidelines for f/u for allReinforces need for primary caref/u and transition out of cancerclinic settingBuy in from multiple differentoncologist for patient referraldifficult
  42. 42. Tool Kit Visit• Treatment summary and care plan• Cancer screening recommendations• Healthy living counseling– Smoking cessation– Diet– Exercise• Insurance, employment and financialinformation• Referral to rehabilitation and social services
  43. 43. Integrated Care Model•Survivorship visit imbedded in the oncology clinic where thepatient was treated•Survivorship Nurse Practitioner•Ongoing careAdvantages ChallengesEasy transition for patients Requires busy clinical practice tojustifyAccess to treatment history Patients may be reluctant to transitionto primary careWorks well for surveillance ofrecurrent/new cancer as well as forlate effects
  44. 44. Shared-Care ModelComponents• Care shared by two or more clinicians of different specialties• Common understanding of expected components of care andrespective 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 physicianRenders et al: Diabet Med 20:846-852, 2003;Jones et al: Am J Kidney Dis 47: 103-114, 2006Neilsen et al: Qual Saf Health Care 12(4) 263-272.
  45. 45. Cancer SurvivorshipIt’s about RehabilitationPhysicalPsychosocialSpiritual
  46. 46. SurvivorshipServicesPsychosocialCounselingPhysicalTherapyIntegrativeMedicineSupportGroupsSmokingCessationFertilityPreservationPalliativeCareGeneticCounselingSexualHealth
  47. 47. Health Promotion• Diet• Exercise• Smoking Cessation
  48. 48. New York Times BlogLife Interrupted, Suleika Jaouad• “On the rare occasions I initiatedthe conversation myself, talkingabout sex and cancer felt like ashameful secret.”• A friend describes “heroncologist’s visible discomfortwhen she asked him about safebirth control methods.”• “The way women with cancer arebeing educated about theirsexual health is not by theirhealth care providers but on theirown.”
  49. 49. Fertility Preservation ProgramStructurePatientsinformedandreferred ifinterestedResourcesforpatientsResourcesforcliniciansEducationofcliniciansClinicalNurseSpecialist
  50. 50. Journey Forward: Supporting Survivorsand Providers
  51. 51. FROM OUR SURVIVORSHIP EXPERTSVideo presentations featuring MSKCC survivorship experts- physicians, nurses, social workers,psychologists, and physical therapists – address a range of physical, social, practical and personalconcerns faced by cancer survivors. These videos are available free of charge on MSKCC’s LivingBeyond Cancer Web Site (www.mskcc.org/ptrpwebcasts), the MSKCC Survivorship YouTubeChanel and the iTunes MSKCC Survivorship Podcast station.CURRENT PRESENTATIONS INCLUDE:Day-to-Day Coping with LymphedemaThe Importance of Exercise in Cancer SurvivorshipWhy Dont They Hear Me? Communicating with Friends and Family After Treatment EndsSOON TO COME:Changes in Thinking and Memory by Tim Ahles, PhDCoping and Survivorship by Jimmie Holland, MD
  52. 52. We’re All in This Together
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