Download pdf - Survivorship Care Plans: Who is Using them and Why? · Survivorship Care Plans: Who is Using them and Why? Julia H. Rowland, Ph.D., Director ... SEER Cancer Statistics Review, 1975-2008,

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Survivorship Care Plans: Who is Using them and Why?

Julia H. Rowland, Ph.D., Director

Office of Cancer Survivorship National Cancer Institute • National Institutes of Health • DHHS

15th Annual Living with Breast Cancer Symposium

Suburban Hospital, Bethesda, MD

Saturday, November 2, 2013

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1977 1982 1987 1992 1997 2002 2007 2012 2017 2022

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Year

15+ years

10-<15 years

5-<10 years

1-<5 years

<1

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

Women Alive Diagnosed with Breast Cancer

by Current Age (US counts on January 1, 2008)

(Invasive/1st Primary Cases Only, N = 2.6 Million Survivors)

2%

8%

19%

26%

45% ≤ 39 Years

40–49 Years

50–59 Years

60–69 Years

≥ 70 Years

Data 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.

Women Alive Diagnosed with Breast Cancer

by Time Since Diagnosis (US counts on January 1, 2008)

(Invasive/1st Primary Cases Only, N = 2.6 Million Survivors)

Data 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.

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Chronic Effects of Cancer Treatment

• Physical/Medical (e.g., pain, fatigue, memory problems, lymphedema, sexual impairment, amputations)

• 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 Late Effects

Disease recurrence/ new cancers

Cardiovascular disease

Obesity/Diabetes

Osteoporosis

Functional decline

Poor quality of life

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History of a movement…

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Selected Recommendations from the

President’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 results

2. Tumor characteristics (e.g., site, stage and grade,

hormone receptor status, and marker information)

3. Dates of treatment initiation and completion

4. 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. Surveillance for recurrence or new cancer

2. 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 promotion

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

and who is performing these)

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What are the 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:

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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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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Survivorship care planning

• Who should do this?

• When and where is this done?

• Are there evidence-based algorithms for

care?

• 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 Templates

ASCO:

http://www.asco.org/sites/www.asco.org/files/breast_

surveillance_flow_sheet_9.21.12_0.pdf

Journey Forward:

http://journeyforward.org

LiveSTRONG:

http://www.livestrongcareplan.org/

In spite of the uncertainties, there can still be

good quality of life after cancer!