2014 Cancer Survivorship Conference at Jefferson University Hospitals

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Survivorship Care Plans: Survivorship Care Plans: Who Needs them and Why?Who Needs them and Why?

Julia H. Rowland, Ph.D., DirectorOffice of Cancer Survivorship

National Cancer Institute • National Institutes of Health • DHHS

Cancer Survivorship ConferenceCancer Survivorship ConferenceSidney Kimmel Cancer Center

Thomas Jefferson University, Philadelphia, PAThomas Jefferson University, Philadelphia, PAFriday, November 21, 2014Friday, November 21, 2014

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What is to come…What is to come…

Why the interest in survivors’ post-treatment care?

A brief history of ‘survivorship care planning’

State of the art of Survivorship Care Plans (or SCPs)

What’s next?

Estimated and projected number of cancer survivors in the United States from 1977-2022 by years since diagnosis

Source: de Moor et al, CEBP, in press March 2013

United States cancer prevalence projections (2010-2020)Parry et al., Cancer Epidemiol Biomarkers Prev 2011;20:1996-2005

DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. S. and Jemal, A. (2014), DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. S. and Jemal, A. (2014), Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for Clinicians, 64: 252–271.Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for Clinicians, 64: 252–271.

DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. S. and Jemal, A. (2014), Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for S. and Jemal, A. (2014), Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for

Clinicians, 64: 252–271.Clinicians, 64: 252–271.

DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. S. and DeSantis, C. E., Lin, C. C., Mariotto, A. B., Siegel, R. L., Stein, K. D., Kramer, J. L., Alteri, R., Robbins, A. S. and Jemal, A. (2014), Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for Clinicians, 64: 252–271.Jemal, A. (2014), Cancer treatment and survivorship statistics, 2014. CA: A Cancer Journal for Clinicians, 64: 252–271.

Howlader N, Noone AM, Krapcho M, Garshell J, Miller D, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z,Mariotto A, Lewis Howlader N, Noone AM, Krapcho M, Garshell J, Miller D, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z,Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2011, National Cancer Institute. Bethesda, MD, DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2011, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2011, based on November 2013 SEER data submission, posted to the SEER web site, April 2014.http://seer.cancer.gov/csr/1975_2011, based on November 2013 SEER data submission, posted to the SEER web site, April 2014.

Howlader N, Noone AM, Krapcho M, Garshell J, Miller D, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z,Mariotto A, Howlader N, Noone AM, Krapcho M, Garshell J, Miller D, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z,Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2011, National Cancer Institute. Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2011, National Cancer Institute.

Bethesda, MD, http://seer.cancer.gov/csr/1975_2011, based on November 2013 SEER data submission, posted to the SEER Bethesda, MD, http://seer.cancer.gov/csr/1975_2011, based on November 2013 SEER data submission, posted to the SEER web site, April 2014.web site, April 2014.

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Chronic Effects of Cancer Treatment

• Physical/Medical (e.g., pain, fatigue, memory problems, sexual impairment, bowel/bladder control)

• Psychological (e.g., depression, anxiety, uncertainty, isolation, altered body image)

• Social (e.g., changes in interpersonal relationships, concerns regarding health or life insurance, job lock/loss, return to school, financial burden)

• Existential and Spiritual Issues (e.g., sense of purpose or meaning, appreciation of life)

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Cancer Survivors at Increased Risk for LateLate Effects

Disease recurrence/ new cancersCardiovascular diseaseObesity/DiabetesOsteoporosis Functional declinePoor quality of life

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Stresses Associated with Termination of Cancer Treatment

Fear that the cancer will returnConcern about ongoing monitoringLoss of a supportive environmentDiminished sense of well-being due to

treatment effectsSocial demands: ‘re-entry’ problemsNot having a plan of action!

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History of a movement…

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Selected Recommendations from the Selected Recommendations from the President’s Cancer Panel & IOM ReportsPresident’s Cancer Panel & IOM Reports

• When treatment ends, all survivors should receive a summary record that includes important disease characteristics and treatments received.

• In addition, they should be provided with a follow-up care plan incorporating available evidence-based standards of care.

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Treatment Summary (per IOM) - 1

1. Diagnostic tests performed and results2. Tumor characteristics (e.g., site, stage and grade,

hormone receptor status, and marker information)

3. Dates of treatment initiation and completion4. Surgery, chemotherapy, radiotherapy,

transplantation, hormonal therapy, gene, or other therapies provided, including agents used, treatment regimen, total dosage, identifying number and title of clinical trials (if any) indicators of treatment response, and toxicities experienced during treatment

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Treatment Summary (per IOM) - 2

5. Psychosocial, nutritional and other supportive services provided

6. Full contact information on treating institutions and key individual providers

7. Identification of a key point of contact and coordinator of continuing care

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Follow-up Care Plan (per IOM) - 1

1. The likely course of recovery from treatment toxicities, as well as the need for ongoing health maintenance/adjuvant therapy

2. A description of recommended cancer screening and other periodic testing and examinations, and the schedule on which they should be performed (and who should provide them)

3. Information on possible late effects and long-term effects of treatment and symptoms of such effects

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4. Information on possible signs of recurrence and second tumors

5. Information on the possible effects of cancer on marital/partner relationship, sexual functioning, work, and parenting, and the potential future need for psychosocial support

6. Information on the potential insurance, employment, and financial consequences of cancer and, as necessary, referral to counseling, legal aid, and financial assistance

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7. Specific recommendations for healthy behaviors (e.g., diet, exercise, healthy weight, sunscreen use, immunizations,

smoking cessation, and osteoporosis prevention). When appropriate, recommendations that first-degree relatives be informed about their increased risk and the need for cancer screening (e.g., breast cancer, colorectal cancer, and prostate cancer)

8. As appropriate, information on genetic counseling and testing to identify high-risk individuals who could benefit from more comprehensive cancer surveillance, chemoprevention, or risk-reducing surgery

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9. As appropriate, information on known effective chemoprevention strategies for secondary prevention (e.g., tamoxifen in women at high risk for breast cancer)

10. Referrals for specific followup care providers (e.g., rehabilitation, fertility, or psychology), support groups, and /or the patients’ primary care provider

11. A listing of cancer-related resources and information (e.g., internet-based sources and telephone listings for major cancer support organizations)

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Follow-up Care Plan (per IOM)Main Domains to Cover:

1.1. Surveillance for recurrence or new cancerSurveillance for recurrence or new cancer2. Assessment and treatment or referral for

persistent effects (e.g., pain, fatigue, sexual dysfunction, functional impairment, depression, employment issues)

3. Evaluation of risk for and prevention of late effects (e.g., second cancers, cardiac problems, osteoporosis);

health promotion4. Coordination of care (e.g., including frequency of visits, tests

and who is performing these)

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What are the current standards for survivorship care planning today?

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ASCO (American Society of Clinical Oncology) Quality Oncology Practice Initiative (QOPI) Indicators

FU Care (2008):Was a treatment summary generated?Was a copy given to the patient?Was a copy given/sent to the provider(s)?

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CoC Standards: Phase in for 2015

Standard 3.3:Standard 3.3:

1) A survivorship care plan is prepared by the principal provider who cared for the patient with input from the patient’s other care providers

2) The survivorship care plan is given to the patient on completion of treatment

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CoC Standards: 2015

3) The written or electronic survivorship care plan contains a record of care received, important disease characteristics, and a follow-up care plan incorporating available and recognized evidence based standards of care, when available. Minimum care plan standards should reflect those from the IOM Fact Sheet: Cancer Survivorship Care Planning.

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CoC’s second thoughts on implementation…

The CoC’s survey of accredited programs found that just 37% of responding cancer programs felt "completely confident" that their program would be able to implement Standard 3.3 by 2015. Only 21% indicated that a survivorship care plan process had been developed

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Modified implementation plan for the new CoC standards…

Jan. 1, 2015: Implement a pilot survivorship care plan process involving 10% of eligible patients

Jan. 1, 2016: Provide survivorship care plans to 25% of eligible patients



Jan. 1, 2019: Provide survivorship care plans to all 100% of eligible patients

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Challenges to implementation…source: Blaseg, Kile & Salner , Oncology Issues, May/June 2011

1. Time & personnel constraints (intensive effort to gather data and complete form)

2. IT-related challenges (e.g., absence of an EHR and need to create forms by hand; lack of communication among systems esp. tumor registry and clinics and private offices)

3. Processes and responsibilities (Who should do this? Who should receive the summary? How does information get updated?)

4. Care plan recommendations (e.g., lack of evidence base/standards for surveillance & follow-up for most cancers)

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State of the “art” of SCP

Sabatino SA et al. Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey. J Cancer Surviv Mar 7, 2013 (ePub)

• Of survivors diagnosed in the past 4 years, 58% stated they received some form of written instructions

Salz T et al. Survivorship care plans in research and practice. Ca Cancer J Clin 2012;62:101-117

• Despite the favorable view of these by providers and survivors• Fewer that half (43%) of NCI designated centers deliver SCPs to

breast and colorectal survivors• Of those that do, NONE include all of the IOM recommended

elements

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State of the “art” of SCP

Blanch-Hartigan et al. Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. J Clin Oncol 2014; 32(15):1578-1585

• While most oncologists (64%) report always/almost always discussing survivorship care recommendations, fewer (32%) discussed who should follow the survivor; fewer still provided a SCP (< 5%)

• Oncologists who reported receiving training in long-term/late effects of cancer were more likely to provide SCPs

• PCPs who received SCPs from oncologists were 9x more likely to report survivorship discussion with survivors

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What’s Next: Survivorship care planning• Who should do this?• When and where is this done?• What impact does this care planning have

on: patients, providers, systems, burden of cancer

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Evaluating the impact - 1Source: Rowland & Ganz, 2011

How might SCPs benefit you? Improved (perceived) pt/md communication Improved understanding of needed follow-up tests,

their purpose and timing and who will conduct these Better understanding of potential late effects of

illness and what symptoms might be important to report

Promote adherence to recommended follow-up activities; fewer requests for unnecessary tests

Improved ability to identify providers and resources to address persistent effects of cancer & treatment

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How might SCPs benefit you, cont’d Decreased cancer-related morbidity Improved health-related quality of life and function Improved healthy lifestyle choices Potentially, improved overall survival

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What impact could a SCP have for your provider?

Improved (perceived) pt/md communication Improved doctor/doctor communication Better ability to coordinate care Improved knowledge about and ultimately

standardization of follow-up care behaviors Improved ability to monitor survivors’ health and

implement changes in care in response to new information about treatment exposures and follow-up needs

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What benefit might SCPs have for insurers and healthcare delivery systems?

Reduced duplication of services Improved access to information necessary to guide

follow-up care; less time spent searching for this Enhanced quality of care delivery (e.g., compliance

with evolving quality standards)

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What’s Next:Survivorship care planning• Who should do this?• When and where is this done?• What impact does this care planning have

on: patients, providers, systems, burden of cancer

• Who should provide what care to whom? (Oncologists, PCP, CNP); role of medical homes?

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Current TemplatesASCO:

Cancer Survivorship Compendium

http://www.asco.org/practice-research/asco-cancer-survivorship-compendium

Survivorship Care Plan Template

Mayer DK et al., J Oncol Pract 2014 Oct 14 [Epub ahead or print]

Journey Forward:http://journeyforward.org

LiveSTRONG:http://www.livestrongcareplan.org/

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In summary…

Survivorship care plans have arrived. If you do not have one, ask for one!

Care planning, however, is about a processprocess, not a piece of paper

Good survivorship care is engaged, dynamic, and individually tailored

In spite of the uncertainties, there can still be In spite of the uncertainties, there can still be good quality of life after cancer!good quality of life after cancer!

Healthcare

2014 Cancer Survivorship Conference at Jefferson University Hospitals