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Regina Cunningham, PhD, RN, AOCN

Associate Chief Nursing OfficerAbramson Cancer CenterUniversity of Pennsylvania Health SystemAssociate Adjunct Professor

School of NursingUniversity of Pennsylvania

January 17, 2013

Developing a Cancer Survivorship Programme

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Objectives

�Provide an overview of current trends and issues in cancer survivorship

�Discuss examples of developing programs in cancer survivorship

�Review evidence on effectiveness of selected services

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Data Source: Howlader N, Noone AM, Krapcho M, Neyma n 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 Statistic s Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer. gov/csr/1975_2008/, based on November 2010 SEER dat a submission, posted to the SEER web site, 2011.

Estimated Number of Cancer Survivors in the United States 1971 - 2008

4444

Survivor Demographics

�Currently more that 13 million in the US

�18 million projected by 2020

�These volumes underscore the magnitude of the need to identify strategies to meet the unique health care needs of this population

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Data Source: Howlader N, Noone AM, Krapcho M, Neyma n 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 Statistic s Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer. gov/csr/1975_2008/, based on November 2010 SEER dat a submission, posted to the SEER web site, 2011.

Estimated Number of Persons Alive in the U.S. Diagn osed with Canceron January 1, 2008 by Current Age

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Data Source: Howlader N, Noone AM, Krapcho M, Neyma n 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 Statistic s Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer. gov/csr/1975_2008/, based on November 2010 SEER dat a submission, posted to the SEER web site, 2011.

Estimated Number of Persons Alive in the U.S. Diagn osed with Canceron January 1, 2008 by Site (N = 11.9 M)

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Data Source: Howlader N, Noone AM, Krapcho M, Neyma n 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 Statistic s Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer. gov/csr/1975_2008/, based on November 2010 SEER dat a submission, posted to the SEER web site, 2011.

Estimated Number of Persons Alive in the U.S. Diagn osed with Canceron January 1, 2008 by Time From Diagnosis and Gende r

8888

Lots of National Attention

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Who are Survivors?�Anyone diagnosed with cancer

�People living with a cancer diagnosis for five years or more

�From the time of diagnosis through death

�Family members of those diagnosed with cancer

�Beyond the acute diagnosis and treatment phase

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Cancer Survivors: Burden of Illness

� Cancer survivors have poorer health outcomes than d o similar individuals without cancer across multiple measures

� These decrements are consistent across tumor sites and are found in patients many years following reported dia gnosis

Yarbroff, Lawrence, Clauser, Davis, & Brown, JNCI, Vol 96, No 17, 2004

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Post Treatment Sequelae�Variation based on type of disease, stage,

treatment

�Physical 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 life

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Effects of Head and Neck Radiation

Severe burning in the throatXerostomiaPain59 pound weight lossSkin burns to the radiated areaDebilitating weaknessTooth decay, exacerbated by a lack of saliva

Scarring of muscles in the neck with loss of functi onTorticollis (requiring Botox)Loss of thyroid functionRadiation-induced weakness of the ligamentsCalcifications of the carotid arteries

HIGH

RISK

LOw

To

MODERATE

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Survivor Care

�Need to understand the down stream effects of cancer and cancer treatment on disease-specific populations

�Many late effects may be modified through anticipatory, proactive care

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Survivor Care

�Patients require long-term follow up care to ensure management of persistent problems and early detection of emerging problems or late effects

�Recognized 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 effects

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Survivor Care

�The greatest challenge of the growing number of cancer survivors is how best to provide long-term follow-up care

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Questions 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 car e?

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ASCO Cancer Prevention Committee

To 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)

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ASCO Cancer Prevention Committee

Is 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%

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Information 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 cari ng for cancer patients is lacking.

� Community oncologists are better at information sha ring than academic oncologists.

DiCicco-Bloom, B. & Cunningham, R. S. Journal of Cancer Survivorship, Nov 27, 2012.

20202020

Patient Perspectives on Follow-Up

�183 patients completed a self-administered survey

�36% were not sure which physician was in charge of their care

�80% wanted counseling from family physicians, but only 20% received it

�32% were not satisfied with care provided by family physicians

�18% not satisfied with care provided by specialists

Miedema, MacDonald, & Tatemichi, Canadian Family Ph ysician, Vol 49, 2003

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CINJ Center for Cancer Survivorship

Center for Cancer Survivorship

ResearchEducationClinical Care

State of the art survivorship care for patients and families

Goal decrease morbidity and mortality, enhance QOL, optimize health

Ageless

Broad spectrum of cancers

APN driven

Develop and implement broad educational agenda

Professionals

Patients

Public

Donors

Develop a robust research agenda around issues of survivorship

Basic

Clinical

Population

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Clinical Care: NP- led Model

� Long term follow up patients “transitioned” to diseas e-based NP- led survivor clinic at specific point in t he care trajectory

� NP managed panel of long term follow up patients independent

� NP worked in collaborative practice with disease-ba sed physician

� NP provides “holistic” long term care with a focus on :• Surveillance• Adherence to guidelines• Health Optimization

– Bone health– Diet and exercise– Screening

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Clinical Care: NP-led Model

�Strengths• 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

revenue

�Weaknesses• Required “referral”

from physician• Physician buy-in

– Relationship– Psychological benefit of

“well baby check”– Increased workload

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Livestrong Cancer Survivor Program at ACC

How the Program Works

�APNs work with primary oncologist or primary care doctor

�Focus 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

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Survivor Care Plans

�Recommended in the IOM report�Developed by oncology providers�Provide specific information on type of treatment�Recommendations for follow up care and

monitoring�Education and “prescription for living”�Facilitates transition…continuity

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Survivor 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 visits

Hewitt, Bamundo, Day, & Harvey, JCO, June 2007

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Survivor Care Plans

McCabe M, Bhatia S, Oeffinger KC et al. American So ciety of Clinical Oncology Statement: Achieving Hig h-Quality Cancer Survivorship Care. J Clin Oncol Published ah ead of print on January 7, 2013 as 10.1200/JCO.2012 .46.6854

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IOM: Survivorship Education Agenda

�Prevention of secondary cancers�Long-term complications�Rehabilitation services�Quality of life issues in survivorship�Detection of recurrent or secondary

cancers�Pain management �Short-term complications�Treatment of recurrent cancer

COH R-25

Quality Survivor care

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Survivorship Education

McCabe M, Bhatia S, Oeffinger KC et al. American So ciety of Clinical Oncology Statement: Achieving Hig h-Quality Cancer Survivorship Care. J Clin Oncol Published ah ead of print on January 7, 2013 as 10.1200/JCO.2012 .46.6854

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Research 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 malignancies

�Patterns of care�Transitional care model test�EMR issues�Enhancing care through education�Effects on family members�Age-specific issues �Insurance/employment�Multicultural needs of survivors�Comorbidity issues

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Office of Cancer Survivorship

� Dedicated to enhancing the length and quality of li fe 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/theories•

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Key Messages/Take Home

�There are a lot of survivors…breast cancer survivors are leading the pack…and we can anticipate substantially more

�These patients have special health care needs as a result of their illness

�There are educational needs around this issue

�There is an opportunity to establish new models of care for this group of patients

�There is a substantial opportunity to develop a research agenda around survivorship issues