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SURVIVORSHIP
GUIDELINES
Neil Maniar, PhD, MPH
Vice President, Health Systems
Overview of Survivorship
• Historically, 5 years after diagnosis
• From the moment of diagnosis through the balance of life
– Including family and caregivers
• After active treatment
Prevention
Detection
Diagnosis
Treatment
Survivorship
Focus on Survivorship
Number of Cancer Survivors
12,000,000
8,000,000
2024
2024
10,000,000
2014
2014
6,000,000
4,000,000
2,000,000
Males
Females
American Cancer Society, 2014a
Focus on Survivorship – Males
2014
*Non-Hodgkin
2024
Prostate
Prostate
Colorectal
Colorectal
Melanoma
Melanoma
Urinary Bladder
Urinary Bladder
NH* Lymphoma
NH* Lymphoma
Testis
Kidney
Kidney
Testis
Lung/Bronchus
Oral Cavity/Pharynx
Oral Cavity/Pharynx
Lung/Bronchus
Leukemia
Leukemia
American Cancer Society, 2014a
Focus on Survivorship – Females
2014
*Non-Hodgkin
2024
Breast
Breast
Uterine Corpus
Colorectal
Colorectal
Uterine Corpus
Melanoma
Melanoma
Thyroid
Thyroid
NH* Lymphoma
NH* Lymphoma
Uterine Cervix
Lung/Bronchus
Lung/Bronchus
Uterine Cervix
Ovary
Ovary
Kidney
Kidney
American Cancer Society, 2014a
Survivorship by Time Since Diagnosis
Female
Male
0%
10%
20%
30%
0 to < 5 years
15 to <20 years
40%
50%
60%
5 to <10 years
20 to <25 years
70%
80%
10 to <15 years
25+ years
90%
100%
American Cancer Society, 2014
Survivorship Care
■ Calls for Survivorship Care
■ Survivorship Needs
IOM Recommendation #3
Health care providers should use systematically
developed evidence-based clinical practice guidelines,
assessment tools, and screening instruments to help
identify and manage late effects of cancer and its
treatment. Existing guidelines should be refined and
new evidence-based guidelines should be developed
through public-and private-sector efforts.
IOM Recommendation #7
The National Cancer Institute (NCI), professional
associations, and voluntary organizations should
expand and coordinate their efforts to provide
educational opportunities to health care providers to
equip them to address the health and quality of life
issues facing cancer survivors.
IOM Recommendation
Thus, the committee recommends that the cancer care
team collaborate with their patients to develop a care
plan that reflects their patients’ needs, values, and
preferences, and considers palliative care needs and
psychosocial support across the cancer care continuum.
Impacts of Cancer Treatment
Radiation Side
Effects
Hormonal
Therapy Side
Effects
Chemotherapy
Side Effects
Surgical Side
Effects
Individual
Effects/Risks
Non-TreatmentSpecific Side
Effects
Cancer Survivor Needs
Psychological Well-Being
Physical Well-Being
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•
•
•
•
Functional status
Fatigue and sleep
Overall physical health
Fertility
Pain
Quality of Life
•
•
•
•
•
Social Well-Being
•
•
•
•
•
•
Family distress
Roles and relationships
Affection/sexual function
Appearance
Isolation
Finances/employment
Control
Anxiety
Depression
Fear of recurrence
Cognition/attention
Spiritual Well-Being
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•
•
•
•
Meaning of illness
Religiosity
Transcendence
Hope
Uncertainty
Inner strength
Ferrell & Hassey Dow, 1997
The Need for Survivorship Care
• Rapidly growing population of survivors
• Survivors experience unmet physical, psychosocial,
practical and spiritual needs
• Inconsistent coordination of care and communication
between primary care providers and oncologists
• Significant long-term and late effects
• Complexity of care, comorbid conditions
American Cancer Society, 2014a
Smith et al., 2008
Long-term and Late Effects
• Long-term effects are medical problems that develop
during active treatment and persist after the completion of
treatment
• Late effects are medical problems that develop or
become apparent months or years after treatment is
completed
Guideline Development
• National Cancer Survivorship Resource Center
• A collaboration between ACS and George Washington University
• Established 2010 with the support of a 5 year cooperative agreement
from CDC
Guidelines Development Process
Staff Conduct
Preliminary
Literature Search
Publish
guidelines in
CA
Development &
External Review of
Manuscript
Convene Guidelines
Expert Workgroup &
Conduct Literature
Review & Synthesis
ACS National Board
of Directors Review
& Approval
Panel Drafts & Edits
Guidelines
ACS Internal
Medical Review
Cowens-Alvarado, R., Sharpe, K., Pratt-Chapman, M., Willis, A., Gansler, T., Ganz, P. A., Edge, S. B., McCabe, M. S. and Stein, K. (2013),
Advancing survivorship care through the National Cancer Survivorship Resource Center. CA: A Cancer Journal for Clinicians, 63: 147–150
ACS Cancer Survivorship Care Guidelines: Development
bit.ly/SurvivorshipCenter
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Survivorship Guidelines
ACS Cancer Survivorship Care Guidelines: Key Areas
Cancer Survivorship Clinical Practice Guidelines
National Comprehensive
Cancer Network
• By Topic:
• Anxiety and depression
• Cognitive function
• Exercise
• Fatigue
• Immunizations and
infections
• Pain
• Sexual function
(female/male)
• Sleep disorders
American Society of
Clinical Oncology
• By Topic:
• Neuropathy
• Fatigue
• Anxiety and depression
• Fertility preservation
• Breast cancer
survivorship care
guideline (ACS/ASCO)
American Cancer Society
Survivorship Care
Guidelines for Primary
Care Providers
• By Topic:
• Holistic:
• Surveillance
• Screening
• Long-term and late
effects
• Health promotion
• Breast (ACS/ASCO),
colorectal, head and
neck and prostate
currently available
ACS Cancer Survivorship Care Guidelines: CA
articles
bit.ly/ACSPrCa; bit.ly/acscolorc; bit.ly/BrCaCare; bit.ly/acsheadneck
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ACS Cancer Survivorship Care Guidelines: ACS website
cancer.org/professionals
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ACS Cancer Survivorship Care Guidelines: CA Patient Pages
bit.ly/CAPatientPages
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5 Survivorship facts to know

There are 14 million cancer survivors in the United States today, by 2024 there will
be 19 million.

ACS has developed evidence-based guidelines, drawn from the most recent, rigorous
research to develop specific survivorship guidelines in 4 areas: Breast, Colon,
Head/Neck, Prostate cancers.

The evidence in these four areas has helped us develop a general set of guidelines
for all quality cancer survivorship.

Meeting the Commission on Cancer (CoC) standards for Survivorship Care Plans and
Psychosocial Distress Screening has been challenging for cancer centers.

Incorporating these guidelines goes beyond “checking the box” for accreditation
standards. Your systems can use these to build and deliver high quality survivorship
care.
ACS Cancer Survivorship Care Guidelines: CoC Standards
https://www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx
Standard 3.2
Standard 3.3
Psychosocial Distress Screening
Survivorship Care Plan
The cancer committee develops and
implements a process to integrate and
monitor on-site psychosocial distress
screening and referral for the provision
of psychosocial care.
The cancer committee develops and
implements a process to disseminate
a comprehensive care summary and
follow-up plan to patients with cancer
who are completing cancer treatment.
The process is monitored, evaluated,
and presented at least annually to the
cancer committee and documented in
minutes.
http://youtu.be/vmMz9mt4gJM
http://www.youtube.com/watch?v=x7
a62fSOq_w&feature=youtu.be
cancer.org/survivorshipcareplans
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Audience
Survivorship
Facts
CoC
Standards
Application in Hospital Settings
Conceptualization of Guideline Use in
Hospital Systems
■ Content
– Use guidelines to include in survivorship care plans to meet
standards requirement of inclusion of follow-up care plans.
■ Clinic Visits and Pathways
– Use the guidelines and visit checklist to design and plan clinical
survivorship visits and clinical pathways.
■ Strategic Planning
– Use the guidelines in strategic planning to design comprehensive
survivorship care across the cancer center and related clinical
and patient services settings.
Survivorship Guidelines Use
Content
Clinical
Strategic
Content
CoC Standard 3.3 Survivorship Care Plan
The cancer committee develops and
implements a process to disseminate
a comprehensive care summary and
follow-up plan to patients with cancer
who are completing cancer treatment.
The process is monitored, evaluated, and
presented at least annually to the cancer
committee and documented in minutes.
http://www.youtube.com/watch?v=x7a62f
SOq_w&feature=youtu.be
cancer.org/survivorshipcareplans
Survivorship Guidelines
Compliance with the standard can include
the following information as a component
of a survivorship care plan:
• Recommendations for surveillance and
recurrence (e.g., timelines) based on
staging and treatment
• Assessment of physical and psychosocial
late and chronic effects
• Health promotion information
• Contact information for specialists and
new concerns (e.g., care coordination)
What Oncologists Should Know
New Commission on Cancer Accreditation Standards require (1) Survivorship Care
Plans (treatment summary + follow-up care plan) be given to and discussed with
patients treated with curative intent who are finishing active treatment, and (2) patients
to be screened for distress and psychosocial health needs. As a result, these practices
are becoming part of the standard of care.
American Cancer Society Cancer Survivorship Care Guidelines are available to guide
the content of Survivorship Care Plans for colorectal, head and neck and prostate
cancer survivors. A joint American Cancer Society/American Society of Clinical
Oncology Cancer Survivorship Care Guideline is available to guide the content of
Survivorship Care Plans for breast cancer survivors. View them at:
www.cancer.org/professionals.
NCRSC Toolkit pg.9/81
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Clinical Applications
Clinic Visits
For follow-up visits focused on survivorship
and surveillance, provider checklists are
available for:
• Breast, Colorectal, Head/Neck and
Prostate cancers
• General components of cancer
survivorship care for other cancers
Clinical Pathways
Designing clinical processes to manage
assessment and quality processes related
to components of survivorship care.
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Clinical Pathways Example
Standard 3.2 Psychosocial Distress
Screening
The cancer committee develops and
implements a process to integrate and
monitor on-site psychosocial distress
screening and referral for the provision of
psychosocial care.
http://youtu.be/vmMz9mt4gJM
Example:
As part of care for colorectal cancer
survivors, a screening process utilizing
recommended tools could be designed to
assess, manage, and monitor:
• Psychosocial long-term and late effects
• Physical long-term and late effects
• Need for cancer rehabilitation
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Strategic Planning
• What would comprehensive survivorship care look like in our
system?
• How can our system build survivorship care utilizing direct clinic
services, non-clinical care (e.g., educational programming), and
ACS and community resources?
• What components of guideline supported care does our system
provide?
• Where are the needs?
• Who can provide the care? Who will pay for it?
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The guidelines and toolkit provide cancer centers evidencebased recommendations and resources for systems to
develop comprehensive survivorship care strategies to
address the needs of this growing population of patients.
Tools and Resources
■ Email and Social Media
■ Slide Deck
■ App
■ Dissemination Toolkit
Tools and Resources –
Email and Social Media
■ Email
– Tailored text for hospital systems - 3 emails with messaging from the
dissemination toolkit, containing information about the release of the
guidelines, relevance to CoC accounts and provider resources
– Sample Emails – Dissemination Toolkit (pg. 53-55)
■ Social Media – Dissemination Toolkit (pg. 43-52)
– Strategies and best practices
– Messages with links/hashtags for Twitter, Facebook, LinkedIn, Google+
– Messaging tailored to specific groups (i.e., oncology and primary care
providers, public health, patients, caregivers)
Tools and Resources –
Slide Deck Presentations
■ Overview of Survivorship (choose 1-2 slides)
■ Need for Survivorship care
– Slides 14, 15 provide nice overview
– CoC standards slide
■ Guidelines development (1-2 slides)
– Emphasize scientific rigor/evidence-base and access
■ Guidelines content (1-2 slides)
■ Three levels of implementation (content, clinical and strategic) (insert slide numbers
when complete (required)
■ Provider tools and resources (app, toolkit, e-learning series)
Tools and Resources –
Provider Tools
■ App – released on iTunes, soon to be released on Android
– Places all the guidelines information at clinician finger tips
– Download the app on your phone or a friend’s phone, play with it
■ E-learning series
– It’s not just for primary care; anyone delivering survivorship
clinical care can use it
ACS Cancer Survivorship Care Guidelines: Clinician Mobile App
http://apple.co/1Z5Kpfe #oncology and Android Google Play
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Cancer Survivorship E-Learning Series
bit.ly/PCPE-Learning
E-Learning Series: Module Topics
Module 1
• The Current State of Survivorship Care and the Role of Primary Care Providers
Module 2
• Late Effects of Cancer and its Treatments: Managing Comorbidities and
Coordinating with Specialty Providers
Module 3
• Late Effects of Cancer and its Treatment: Meeting the Psychosocial Health
Care Needs of Survivors
E-Learning Series: Module Topics
Module 4
• The Importance of Prevention in Cancer Survivorship: Empowering
Survivors to Live Well
Module 5
• A Team Approach: Survivorship Care Coordination
Module 6
• Cancer Recovery and Rehabilitation
E-Learning Series: Module Topics
Module 7
• Spotlight on Prostate Cancer Survivorship
Module 8
• Spotlight on Colorectal Cancer Survivorship
Module 9
• Spotlight on Breast Cancer Survivorship
Module 10
• Spotlight on Head and Neck Cancer Survivorship
ACS Cancer Survivorship Care Guidelines: Dissemination Toolkit
bit.ly/NCSRCToolkit
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Cover
Thank You
To learn more about The Survivorship Center,
Visit: cancer.org/survivorshipcenter
Questions about The Survivorship Center?
Email: [email protected]
Questions about the Toolkit or E-Learning Series?
Email: [email protected]
This presentation is supported by Cooperative Agreement #5U55DP003054 from The Centers for
Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not
necessarily represent the official views of the Centers for Disease Control and Prevention.
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Questions from you and for you?
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