The Survivorship Center:
Improving Quality of Life for
Post-Treatment Survivors
Rachel Cannady
Behavioral Scientist
June 18, 2013
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Agenda
• Overview of The Survivorship Center
• Gaps and Recommendations
• Deliverables and Resources
• Next Steps
• Questions/Comments
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The Survivorship Center Aims
• To improve the quality of life of cancer survivors and
caregivers
• To reduce death and disabilities due to cancer by focusing on
the importance of improving functioning and helping
survivors achieve optimal health and well-being
• To advance survivorship as a distinct phase of cancer care,
promote healthy behaviors to reduce late and long term
effects of cancer and its treatment, and improve surveillance
and screening practices to detect the return of cancer
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The Survivorship Center
• Developing and distributing a broad range of cancer
survivorship tools and resources for providers, cancer
survivors and caregivers
• Developing cancer survivorship clinical practice
guidelines for primary care providers
• Educating primary care providers about how to best
care for survivors
• Promoting healthy behaviors to reduce late and longterm effects of cancer and its treatment through selfmanagement
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Socio-Ecological Approach to
Advancing Survivorship
Society /
Policy Level
Health Care
System Level
Cancer
Survivor Level
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The Survivorship Center Expert Panel
The Survivorship Center Core Team
(ACS, GWCI, CDC)
Expert Panel Steering Committee
Systems Policy &
Practice:
Clinical Survivorship
Care Workgroup
Policy Advocacy
Workgroup
Quality of Life:
Information Delivery
Workgroup
Quality of Life:
Programs and
Navigation
Workgroup
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Gaps in Addressing Post-Treatment
Survivorship Issues
Population
Gaps
Survivors
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Health Care Systems
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Society / Policy
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Gaps in the availability of evidence-based information, resources and programs on
cancer survivorship
Need for a tool to assist survivors with information seeking to alleviate information
overload and recognize issues in information quality
Gaps in tools to empower survivors to manage survivorship care
Lack of consensus definition on survivorship programs
Lack of clinical survivorship care guidelines
Lack of clarity on which HCP’s should be responsible for clinical survivorship care
Variations in the knowledge about and availability of services provided for posttreatment care
Gaps in clinical information on survivorship, education and training of HCP’s
Gaps in financial reimbursement of clinical survivorship services
Gaps in research funding and limited evidence base on which to base policy
recommendations
Need to establish which infrastructure is most effective and efficient in delivering
survivorship care
Lack of information on the costs and benefits of providing clinical survivorship care
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Recommendations to Address PostTreatment Survivorship Issues
Population
Recommendations
Survivors
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Health Care Systems
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Society / Policy
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Refinement of chronic disease self-management model for cancer
survivorship to help empower survivors to manage their
survivorship care
Develop evidence-based, culturally appropriate information and
resources to meet the needs of post-treatment survivors
Increase awareness of existing survivorship information and
resources
Develop survivorship care guidelines for clinical and psychosocial
needs
Routine provision of survivorship care plans
Education & training of health care professionals
Reimbursement for essential post-treatment survivorship care
Funding for survivorship research to increase evidence base
Education of policy makers to increase awareness of survivorship
issues
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Performance Indicators for Measuring
Impact on Survivorship Issues
Population
Recommendations
Survivors
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Increase in survivor satisfaction with care
Increase in positive (healthy), self-reported behavior change
Increase in self-efficacy through utilization of self-management
techniques
Health Care Systems
•
Increase in adherence to adjuvant therapies, screening and surveillance,
follow-up appointments, and referral to specialists when needed
Increase in knowledge of physical and psychosocial issues faced by
cancer survivors
Increase in utilization and adoption of clinical follow-up care guidelines
Increase in utilization of a survivorship care plan
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Society / Policy
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Increase in awareness of survivorship issues among decision and policy
makers
Increase in collaboration among cancer organizations to educate the
public and policy makers on cancer survivorship
Increase in the support of reimbursement of survivorship care, including
the creation and communication of survivorship care plans
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Survivorship Information &
Program Gaps
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Socio-Ecological Approach to
Advancing Survivorship
Society /
Policy Level
Health Care
System Level
Cancer
Survivor Level
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Quality of Life: Information Delivery
Workgroup
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Quality of Life: Information Delivery
Gaps Identified
• Gaps in the availability of information on
cancer survivorship
• Need for a tool to assist survivors with
information seeking
• Gaps in communication between
survivors and providers
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Survivor Focused Resources
• Gap analysis manuscript
(anticipated publication
fall 2013)
• Web pages on cancer.org
• Life After Treatment Guide
• Rx for Survivorship
www.cancer.org/survivorshipcenter
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Quality of Life:
Programs and Navigation Workgroup
Potential for Programmatic Action to Address
Survivors’ Needs
Psychological Needs
Medical Needs
• Social support
• Communication with providers
• Coping strategies
• Transition back to primary care
Physical Needs
Social Needs
• Managing long-term/late
effects
• Financial/employment
assistance
• Health behavior interventions
• Caregiver respite services
Adapted from the IOM report, Lost in Transition (2006)
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Quality of Life: Programs and Navigation
Gaps Identified
• Need to create a consensus-based
definition of a cancer survivorship
program
• Need to increase evidence-based
survivorship programs
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Cancer Survivorship Program Definition
“The goal of a cancer survivorship program is to
maximize the quality of life of survivors and their
caregivers. The program should include a
comprehensive set of services provided by
multidisciplinary groups working together to assure
effective medical care, education and emotional
support. Communication between and among
survivors, their caregivers and providers is essential for
the seamless referral, navigation and coordination of
these services.”
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Survivorship Program Evaluation Guide
• Includes and extends
 Participant satisfaction
 Program attrition
 Past participant referrals
• Evaluates program impact on
quality of life
www.cancer.org/survivorshipprogramevaluation
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Cancer Survivor Program Resource
Inventory
• Catalogue post-treatment survivorship resources
• Online repository leveraging cancer.org
• Identify and share promising practices
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Chronic Disease Self-Management Program
“Cancer: Thriving and Surviving” Pilot
“Cancer: Thriving and Surviving” Pilot Study
Questions
•
Determine the feasibility of delivering the program using the
American Cancer Society’s volunteer structure
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Identify effective strategies for enrolling participants in the
program
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Contribute to the existing evidence base for the program
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Clinical Care Guidelines for Cancer
Survivors
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Socio-Ecological Approach
Society /
Policy Level
Health Care
System Level
Cancer
Survivor Level
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Systems, Policy & Practice: Clinical
Survivorship Care
Gaps Identified
• Lack of clinical survivorship care guidelines
• Lack of clarity on which health care professionals
should be responsible for clinical survivorship care
• Variations in the availability of and services provided
for post-treatment survivorship care
• Gaps in clinical information on survivorship,
education and training of health care professionals
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Guidelines Development:
Beginning to Fill the Gaps
• Target audience is primary care providers
• Offers comprehensive, patient-centered care
• Management of late/ long-term effects
• Psychosocial recommendations
• Screening, surveillance for new/recurrent cancers
• Prevention and routine health recommendations
• Coordination among specialists and PCPs
• Train health care provider teams on delivering survivorship
care
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Guidelines Development Process
Staff Conduct
Preliminary
Literature Search
Publish
guidelines in
CA
ACS National Board
Review & Approval
Convene Guidelines
Expert Workgroup &
Conduct Literature
Review & Synthesis
Mission Outcomes
Committee
Approval
Panel Drafts & Edits
Guidelines
Chief Medical
Officer Review &
Approval
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General Summary of Follow-up Care Guidelines
for Cancer Survivors
•
Request a treatment summary and survivorship care plan from the
patient’s oncology team
•
Routinely counsel patients on health promotion issues & follow
American Cancer Society Nutrition & Physical Activity Guidelines for
Cancer Survivors
•
Follow American Cancer Society cancer screening guidelines to screen
for second primary cancers
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Know and recognize the signs / symptoms of cancer recurrence and refer
patients to appropriate follow-up tests or to oncology provider for
follow-up
•
Routinely assess psychosocial status of patients and refer to psychosocial
services or prescribe medication as needed
Source: Rock, Doyle, et. al., (2012). Nutrition and physical activity guidelines for cancer survivors. CA:
Cancer J Clinicians 2012; American Cancer Society, Cancer Prevention & Early Detection Facts & Figures.
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Provider Education & Program Resources
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E-Learning Series for Primary Care Providers
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Focus Groups of
Primary Care Providers
• Focus groups of primary care stakeholders to determine:
 How guidelines impact practice change
 How providers prefer to receive guidelines
 Guideline use in practice
 Guideline format preference
 Optimal methods for educating primary care providers on
survivorship guidelines and related survivorship care delivery
information
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Guide for Delivering Survivorship Care
• Online version in development now
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Policy Changes to Improve
Survivorship Care and Outcomes
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Socio-Ecological Approach
Society /
Policy Level
Health Care
System Level
Cancer
Survivor Level
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Purpose of Policy Advocacy Efforts
• Increase awareness of survivorship among U.S.
policy- and decision-makers and further the
development and implementation of policies
to promote the delivery of high-quality
services to cancer survivors
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Policy Advocacy
Gaps Identified
• Gaps in financial reimbursement of clinical survivorship
services
•
Gaps in research funding and limited evidence base on
which to base policy recommendations
•
Need to establish which operational or organizational
structure is most effective and efficient in delivering
survivorship care
•
Lack of information on the costs and benefits of providing
clinical survivorship care
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Policy Advocacy
Recommendations
• Society / Policy Level
Reimbursement for essential post-treatment
survivorship care
Funding for survivorship research to increase
evidence base
Education of policy makers to increase
awareness of survivorship issues
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Policy Papers
• Landscape Analysis: provides an overview of the current
policies related to survivorship care, reimbursement for
services and research funding
 Download from www.cancer.org/survivorshipcenter
• Survivorship as a Public Health Priority: provides the
relevance of survivorship within the context of chronic disease
and public health
 Manuscript underway in 2013
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Current Survivorship Center Activities
•
Develop clinical follow-up care
guidelines for primary care providers
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Develop provider tools to disseminate
guidelines and facilitate utilization
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Educate providers
Survivor
Education
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Educate patients
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Evaluate the dissemination, utilization,
and impact of clinical care guidelines
Provider
Health
Care
System
Policy
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Influence systems and policy changes to
enhance survivorship care
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Dissemination of Survivorship Center
Resources
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American Psychosocial Oncology Society
Society of Behavioral Medicine
National Medical Association
ACS/NCI/CDC/LIVESTRONG Biennial
CDC’s National Cancer Conference
Academy of Oncology Nurse Navigators
American Academy of Family Physicians
UICC Cancer World Congress
Connecticut Cancer Partnership Patient Navigation Conference
International Cancer Education Conference
GWCI’s Cancer Health Policy Scholars
GWCI’s Executive Training on Navigation and Survivorship
GWCI’s Roundtable on Cancer Survivorship & Chronic Care
Hospital Grand Rounds/ Cancer Tumor Boards, Washington, DC
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The Survivorship Center
Staff Contact Information
American Cancer Society
GW Cancer Institute
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Principal Investigator / Project Director
Rebecca Cowens-Alvarado
Rebecca.cowens-alvarado@cancer.org
Program Manager
Nicole Erb
nicole.erb@cancer.org
Behavioral Scientist
Rachel Cannady
rachel.cannady@cancer.org
Research Analyst
Kerry Beckman
kerry.beckman@cancer.org
Program Coordinator
Patrice Bowles
patrice.bowles@cancer.org
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Principal Investigator
Lorenzo Norris, MD
lnorris@mfa.gwu.edu
Project Director
Mandi Pratt-Chapman, MA
mandi@gwu.edu
Sr. Project Manager
Anne Willis, MA
annewillis@gwu.edu
Project Coordinator
Elisabeth Reed, MPA
ereed@gwu.edu
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Thank You!
To learn more about The Survivorship Center,
Please visit: www.cancer.org/survivorshipcenter
Or email: survivorship@cancer.org
This presentation is supported by Cooperative Agreement #1U55DP003054
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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