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The Survivorship Center: Improving Quality of Life for

Post-Treatment Survivors

Rachel CannadyBehavioral 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 long-term effects of cancer and its treatment through self-management

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Society / Policy Level

Health Care System Level

Cancer Survivor Level

Socio-Ecological Approach toAdvancing Survivorship

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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 • 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

Health Care Systems • 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 post-

treatment care• Gaps in clinical information on survivorship, education and training of HCP’s

Society / Policy • 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 Post-Treatment Survivorship Issues

Population Recommendations

Survivors • 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

Health Care Systems • Develop survivorship care guidelines for clinical and psychosocial needs

• Routine provision of survivorship care plans• Education & training of health care professionals

Society / Policy • 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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Population Recommendations

Survivors • Increase in survivor satisfaction with care• Increase in positive (healthy), self-reported behavior change• Increase in self-efficacy through utilization of self-management

techniquesHealth 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

Society / Policy • 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

Performance Indicators for Measuring Impact on Survivorship Issues

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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

Psychological Needs

• Social support

• Coping strategies

Medical Needs

• Communication with providers

• Transition back to primary care

Adapted from the IOM report, Lost in Transition (2006)

Potential for Programmatic Action to Address Survivors’ Needs

Physical Needs

• Managing long-term/late effects

• Health behavior interventions

Social Needs

• Financial/employment assistance

• Caregiver respite services

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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

Chronic Disease Self-Management Program“Cancer: Thriving and Surviving” Pilot

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“Cancer: Thriving and Surviving” Pilot Study Questions

• Determine the feasibility of delivering the program using the American Cancer Society’s volunteer structure

• Identify effective strategies for enrolling participants in the program

• 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 ProcessStaff Conduct Preliminary

Literature Search

Convene Guidelines Expert Workgroup & Conduct Literature Review & Synthesis

Panel Drafts & Edits Guidelines

Chief Medical Officer Review &

Approval

Mission Outcomes Committee Approval

ACS National Board Review & Approval

Publish guidelines in

CA

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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

• 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

Coming Soon

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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 AdvocacyGaps 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 AdvocacyRecommendations

• Society / Policy LevelReimbursement 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 fundingDownload from www.cancer.org/survivorshipcenter

• Survivorship as a Public Health Priority: provides the relevance of survivorship within the context of chronic disease and public healthManuscript underway in 2013

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Current Survivorship Center Activities• Develop clinical follow-up care

guidelines for primary care providers

• Develop provider tools to disseminate guidelines and facilitate utilization

• Educate providers

• Educate patients

• Evaluate the dissemination, utilization, and impact of clinical care guidelines

• Influence systems and policy changes to enhance survivorship care

Provider

Survivor

Health Care

System

Policy

Education

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Dissemination of Survivorship Center Resources

• 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 CenterStaff Contact Information

American Cancer Society GW Cancer Institute• Principal Investigator / Project Director

Rebecca Cowens-AlvaradoRebecca.cowens-alvarado@cancer.org

• Program ManagerNicole Erbnicole.erb@cancer.org

• Behavioral ScientistRachel Cannadyrachel.cannady@cancer.org

• Research AnalystKerry Beckmankerry.beckman@cancer.org

• Program CoordinatorPatrice Bowlespatrice.bowles@cancer.org

• Principal InvestigatorLorenzo Norris, MDlnorris@mfa.gwu.edu

• Project DirectorMandi Pratt-Chapman, MAmandi@gwu.edu

• Sr. Project ManagerAnne Willis, MAannewillis@gwu.edu

• Project CoordinatorElisabeth Reed, MPAereed@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.