The Survivorship Center: Improving Quality of Life for Post-Treatment Survivors Rachel Cannady Behavioral Scientist June 18,

Agenda Overview of The Survivorship Center Gaps and Recommendations Deliverables and Resources Next Steps Questions/Comments 2

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 3

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 4

Society / Policy Level Health Care System Level Cancer Survivor Level Socio-Ecological Approach to Advancing Survivorship 5

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 6

Gaps in Addressing Post-Treatment Survivorship Issues PopulationGaps 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 7

Recommendations to Address Post- Treatment Survivorship Issues PopulationRecommendations 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 8

PopulationRecommendations Survivors 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 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 9

Survivorship Information & Program Gaps 10

Socio-Ecological Approach to Advancing Survivorship Society / Policy Level Health Care System Level Cancer Survivor Level 11

Quality of Life: Information Delivery Workgroup 12

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 13

Survivor Focused Resources Gap analysis manuscript (anticipated publication fall 2013) Web pages on cancer.org Life After Treatment Guide Rx for Survivorship 14

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 15

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 16

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.” 17

Survivorship Program Evaluation Guide Includes and extends Participant satisfaction Program attrition Past participant referrals Evaluates program impact on quality of life 18

Cancer Survivor Program Resource Inventory Catalogue post-treatment survivorship resources Online repository leveraging cancer.org Identify and share promising practices 19

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 Identify effective strategies for enrolling participants in the program Contribute to the existing evidence base for the program 21

Clinical Care Guidelines for Cancer Survivors 22

Socio-Ecological Approach Society / Policy Level Health Care System Level Cancer Survivor Level 23

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 24

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 25

Guidelines Development Process Staff 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 26

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. 27

Provider Education & Program Resources 28

E-Learning Series for Primary Care Providers 29

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 30

Guide for Delivering Survivorship Care Online version in development now Coming Soon 31

Policy Changes to Improve Survivorship Care and Outcomes 32

Socio-Ecological Approach Society / Policy Level Health Care System Level Cancer Survivor Level 33

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 34

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 35

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 36

Policy Papers Landscape Analysis: provides an overview of the current policies related to survivorship care, reimbursement for services and research funding Download from Survivorship as a Public Health Priority: provides the relevance of survivorship within the context of chronic disease and public health Manuscript underway in

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 PolicyEducation 38

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 39

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The Survivorship Center Staff Contact Information American Cancer Society GW Cancer Institute Principal Investigator / Project Director Rebecca Cowens-Alvarado Program Manager Nicole Erb Behavioral Scientist Rachel Cannady Research Analyst Kerry Beckman Program Coordinator Patrice Bowles Principal Investigator Lorenzo Norris, MD Project Director Mandi Pratt-Chapman, MA Sr. Project Manager Anne Willis, MA Project Coordinator Elisabeth Reed, MPA 41

Thank You! To learn more about The Survivorship Center, Please visit: Or This presentation is supported by Cooperative Agreement #1U55DP 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. 42