Developing a Cancer Survivorship a Cancer Survivorship Programme 2222 Objectives ... SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, ...

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1Page 1Regina Cunningham, PhD, RN, AOCNAssociate Chief Nursing OfficerAbramson Cancer CenterUniversity of Pennsylvania Health SystemAssociate Adjunct ProfessorSchool of NursingUniversity of PennsylvaniaJanuary 17, 2013Developing a Cancer Survivorship Programme2222ObjectivesProvide an overview of current trends and issues in cancer survivorship Discuss examples of developing programs in cancer survivorshipReview evidence on effectiveness of selected services3333Data Source: Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.Estimated Number of Cancer Survivors in the United States 1971 - 20084444Survivor DemographicsCurrently more that 13 million in the US18 million projected by 2020These volumes underscore the magnitude of the need to identify strategies to meet the unique health care needs of this population5555Data Source: Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.Estimated Number of Persons Alive in the U.S. Diagnosed with Canceron January 1, 2008 by Current Age6666Data Source: Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.Estimated Number of Persons Alive in the U.S. Diagnosed with Canceron January 1, 2008 by Site (N = 11.9 M)2Page 27777Data Source: Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.Estimated Number of Persons Alive in the U.S. Diagnosed with Canceron January 1, 2008 by Time From Diagnosis and Gender8888Lots of National Attention9999Who are Survivors?Anyone diagnosed with cancerPeople living with a cancer diagnosis for five years or moreFrom the time of diagnosis through deathFamily members of those diagnosed with cancerBeyond the acute diagnosis and treatment phase10101010Cancer Survivors: Burden of Illness Cancer survivors have poorer health outcomes than do similar individuals without cancer across multiple measures These decrements are consistent across tumor sites and are found in patients many years following reported diagnosisYarbroff, Lawrence, Clauser, Davis, & Brown, JNCI, Vol 96, No 17, 200411111111Post Treatment SequelaeVariation based on type of disease, stage, treatmentPhysical and Psychosocial Concerns Chronic pain Fatigue Sleep disturbances Cognitive dysfunction Depression Existential distress Fear of recurrence Disturbances in body image or self concept Changes in sexuality Altered quality of life12121212Effects of Head and Neck RadiationSevere burning in the throatXerostomiaPain59 pound weight lossSkin burns to the radiated areaDebilitating weaknessTooth decay, exacerbated by a lack of salivaScarring of muscles in the neck with loss of functionTorticollis (requiring Botox)Loss of thyroid functionRadiation-induced weakness of the ligamentsCalcifications of the carotid arteriesHIGHRISKLOw ToMODERATE3Page 313131313Survivor CareNeed to understand the down stream effects of cancer and cancer treatment on disease-specific populationsMany late effects may be modified through anticipatory, proactive care14141414Survivor CarePatients require long-term follow up care to ensure management of persistent problems and early detection of emerging problems or late effectsRecognized as a distinct phase of care and must be considered in service planning Domains Psychosocial and supportive care Health promotion Surveillance and long-term monitoring Early intervention for late and long-term effects15151515Survivor CareThe greatest challenge of the growing number of cancer survivors is how best to provide long-term follow-up care16161616Questions About Survivor Care What kind of care are survivors currently receiving? Who should provide survivor care? Primary Care? Oncologists? What happens to survivors as they transition from the acute care settings? What do patients think of the current system of care?17171717ASCO Cancer Prevention CommitteeTo what extent do you provide general medical care, including health maintenance, screening, and preventive services to the cancer survivors in your practice?Always 31%Sometimes 48%Rarely 15%Not at all 5%(or do not care for cancer survivors)18181818ASCO Cancer Prevention CommitteeIs it the role of the oncology specialist to provide this continuing care to cancer survivors?Yes 74%Are they comfortable providing general medical care to cancer survivors?Yes 66%4Page 419191919Information Sharing Among Providers in Cancer Managing the complex care of cancer patients often requires the expertise of a number of skilled providers. Information sharing among these individuals is one of the most fundamental aspects of ensuring effective care transitions. Systematic information sharing among providers caring for cancer patients is lacking. Community oncologists are better at information sharing than academic oncologists.DiCicco-Bloom, B. & Cunningham, R. S. Journal of Cancer Survivorship, Nov 27, 2012. 20202020Patient Perspectives on Follow-Up183 patients completed a self-administered survey36% were not sure which physician was in charge of their care80% wanted counseling from family physicians, but only 20% received it32% were not satisfied with care provided by family physicians18% not satisfied with care provided by specialistsMiedema, MacDonald, & Tatemichi, Canadian Family Physician, Vol 49, 200321212121CINJ Center for Cancer SurvivorshipCenter for Cancer SurvivorshipResearchEducationClinical CareState of the art survivorship care for patients and families Goal decrease morbidity and mortality, enhance QOL, optimize healthAgelessBroad spectrum of cancersAPN drivenDevelop and implement broad educational agendaProfessionalsPatientsPublicDonorsDevelop a robust research agenda around issues of survivorshipBasicClinical Population22222222Clinical Care: NP- led Model Long term follow up patients transitioned to disease-based NP- led survivor clinic at specific point in the care trajectory NP managed panel of long term follow up patients independent NP worked in collaborative practice with disease-based physician NP provides holistic long term care with a focus on: Surveillance Adherence to guidelines Health Optimization Bone health Diet and exercise Screening23232323Clinical Care: NP-led ModelStrengths NP familiar with patients Expertise Collaborative relationship Decompression of clinic schedule Availability of more new patient slots Greater potential for clinical trials accrual Potential increase in revenueWeaknesses Required referral from physician Physician buy-in Relationship Psychological benefit of well baby check Increased workload24242424Livestrong Cancer Survivor Program at ACCHow the Program WorksAPNs work with primary oncologist or primary care doctorFocus of care is on medical, personal, social, and economic concerns as well as strategies for maintaining long-term health and well-being.Patients complete a questionnaire that ask about any symptoms that can help to identify some of the potential late effects of your cancer treatment including:Heart, thyroid, and bone density problems Fertility issues Intimacy and sexuality concerns Genetic risk of cancer among children or siblings Risk for developing another cancer Quality of life issues 5Page 525252525Survivor Care PlansRecommended in the IOM reportDeveloped by oncology providersProvide specific information on type of treatmentRecommendations for follow up care and monitoringEducation and prescription for livingFacilitates transitioncontinuity26262626Survivor Care Plans IOM focus groups with PCPs to ascertain reaction to receipt of a summary document Draft template provided Findings indicated that summaries would be useful to provide better care, for patients who relocate, change providers, change health pans and for ER visitsHewitt, Bamundo, Day, & Harvey, JCO, June 200727272727Survivor Care PlansMcCabe M, Bhatia S, Oeffinger KC et al. American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care. J Clin Oncol Published ahead of print on January 7, 2013 as 10.1200/JCO.2012.46.6854 28282828IOM: Survivorship Education AgendaPrevention of secondary cancersLong-term complicationsRehabilitation servicesQuality of life issues in survivorshipDetection of recurrent or secondary cancersPain management Short-term complicationsTreatment of recurrent cancerCOH R-25Quality Survivor care29292929Survivorship EducationMcCabe M, Bhatia S, Oeffinger KC et al. American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care. J Clin Oncol Published ahead of print on January 7, 2013 as 10.1200/JCO.2012.46.6854 30303030Research Opportunities: The Short List Survivors cohort study Exercise in survivors Disparities in survivors Healing relationships Survivor care in the PC setting Survivor experiences How well are survivors living? Tobacco use among survivors Behavior modification opportunities Secondary malignanciesPatterns of careTransitional care model testEMR issuesEnhancing care through educationEffects on family membersAge-specific issues Insurance/employmentMulticultural needs of survivorsComorbidity issues6Page 631313131Office of Cancer Survivorship Dedicated to enhancing the length and quality of life of cancer survivors in the US and addressing their unique and poorly understood needs Support research in specific focal areas Understudied cancer sites Health disparities Family and caregiver studies Economic outcomes, patterns of care, service delivery studies Lifestyle and behavior research Cancer communication initiatives Development of instruments/theories32323232Key Messages/Take HomeThere are a lot of survivorsbreast cancer survivors are leading the packand we can anticipate substantially moreThese patients have special health care needs as a result of their illnessThere are educational needs around this issueThere is an opportunity to establish new models of care for this group of patientsThere is a substantial opportunity to develop a research agenda around survivorship issues

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