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Evidence-Based Cancer Survivorship Activities for Comprehensive Cancer Control

Introduction: One of six priorities of CDC’s National Comprehensive Cancer Control Program (NCCCP) is to address the needs of cancer survivors within the local population served by individually funded states, tribes, and territories. This report examines cancer survivorship activities implemented in five NCCCP grantees, which have initiated evidence-based activities outlined in A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies (NAP). Methods: NCCCP action plans, submitted annually to CDC, from 2010 to 2014 were reviewed in February 2015 to assess implementation of cancer survivorship activities and recommended strategies consistent with the NAP. Four state-level and one tribal grantee with specific activities related to one of each of the four NAP strategies were chosen for inclusion. Brief case reports describing the initiation and impact of implemented activities were developed in collaboration with each grantee program director. Results: New Mexico, South Carolina, Vermont, Washington state, and Fond Du Lac Band of Lake Superior Chippewa programs each implemented activities in surveillance and applied research; communication, education, and training; programs, policies, and infrastructure; and access to quality care and services. Conclusions: This report provides examples for incorporating cancer survivorship activities within Comprehensive Cancer Control programs of various sizes, demographic makeup, and resource capacity. New Mexico, South Carolina, Vermont, Washington state, and Fond Du Lac Band developed creative cancer survivorship activities that meet CDC recommendations. NCCCP grantees can follow these examples by implementing evidence-based survivorship interventions that meet the needs of their specific populations.


Introduction
A cancer survivor is defined as any person who has received a diagnosis of cancer, from the time of diagnosis throughout the person's life. 1 The growing population of cancer survivors in the U.S. faces a myriad challenges, including health-related, psychosocial, financial, and other barriers. 1,2 Cancer survivors often face adverse physical, psychosocial, and financial effects stemming from cancer diagnosis and treatment. 3,4 recommendations. 7 In order to assist all NCCCP grantees in the implementation of appropriate, evidence-based recommendations, the current analysis highlights five diverse NCCCP grantees that have implemented NAP-recommended activities. The authors also describe the impact of those activities where available.

Methods
Action plans, submitted annually to CDC by all funded NCCCP grantees, were reviewed extensively in February 2015 for implemented survivorship activities, as previously published. 7 Briefly, annual action plans describing objectives and related programmatic activities from 2010 to 2014 were obtained from each of the 50 U.S. states, the District of Columbia, territories, tribes, and Pacific Island jurisdictions. The plans are maintained within CDC's Chronic Disease Management Information System. To assess the implementation of cancer survivorship objectives, the Chronic Disease Management Information System search engine was used to identify "survivorship" activities within each grantee plan during the study period. Cancer survivorship activities were then categorized by compatibility with nationally accepted, recommended strategies from the NAP report. Criteria included:

1.
surveillance and applied research;

3.
programs, policies, and infrastructure; and

4.
access to quality care and services. 1 After compiling all Comprehensive Cancer Control program interventions that met evidence-based recommendations, CDC researchers selected a group of programs that implemented unique, innovative survivorship activities and represent geographic and demographic diverse populations. Four state programs were chosen for an in-depth analysis (New Mexico, South Carolina, Vermont, and Washington state). An additional tribal program that implemented activities in the surveillance and applied research area was also chosen in order to include information related to American Indian/Alaska Native cancer survivors (Fond Du Lac Band of Lake Superior Chippewa). Program directors (or designated staff) of each selected state or tribal program collaborated with CDC researchers to develop detailed case reports, which describe cancer survivorship activities, initiation, implementation, and impact of evidence-based interventions. Multiple conference calls were held to facilitate discussions with program directors to review and finalize content for case reports. CDC researchers and program directors worked together to compile findings and create this report. Figure 1 shows the states and tribal programs selected for inclusion in this report.

Fond Du Lac Band-Communication, Education, and Training
Fond du Lac Band's "Circle of Life" Cancer Education Program is a culturally tailored program that provides community members with information about all aspects of cancer, including cancer survivorship. The Fond Du Lac Band first implemented an early version of Circle of Life in 2002. It was developed in response to feedback from community leaders and healthcare providers that indicated the need to raise cancer awareness and education across the population. In 2003, the Fond du Lac Band partnered with CDC to designate public health nursing staff to provide cancer education to community members. Later, tribal leaders partnered with the American Cancer Society to establish the current Circle of Life program. The current program utilizes outreach workers to provide individual and small group education sessions using modules on cancer type, cancer treatment, healthy habits, and caregivers that were designed by the American Cancer Society. The modules provide information for cancer survivors and include pre-and post-tests to assess knowledge uptake. An automatic, computer-based evaluation system records information uptake and generates reports. This program also connects cancer survivors and caregivers with available support services. The education program has successfully raised cancer awareness in the tribe and has reached more than 300 individuals. In addition to this, Fond du Lac Band holds an annual "Cancer Survivors Celebration" to bring together cancer survivors and caregivers to raise awareness of the cancer burden in their community. The event combines information sharing presentations with cultural festivities to create a supportive environment for cancer survivors and caregivers. The celebration is intended to raise awareness within the community, and the impact is evaluated with a survey that is distributed during the event.
Results from the event surveys guide future decision making and event planning.

Vermont-Programs, Policies, and Infrastructure
The Vermont Department of Health's Comprehensive Cancer Control Program partnered with cancer survivors and advocates to establish the Vermont Cancer Survivor Network (VCSN). VCSN, a non-profit 501c3 organization, works to identify and implement strategies to meet the Vermont's survivorship goals. Soon after establishment, a focus group study of cancer survivors from around the state was commissioned to determine the needs of Vermont's cancer survivors. The focus group study design and main findings are listed in Table 2 and

Washington-Access to Quality Care and Services
The Washington Comprehensive Cancer Control Program developed and provided patient and provider educational material specifically containing information on the importance of survivorship care plans in 2011. An example of these materials is provided in the Appendix (available online). Following material dissemination across the state, the Washington Comprehensive Cancer Control Program held structured interviews with ten American College of Surgeons-affiliated hospitals across the state to assess awareness and use of survivorship care plans. The interviews yielded important findings and led to the establishment of the state's Cancer Survivorship Clinic. This clinic was developed in partnership with the Providence Health and Services system, which is headquartered in Washington and has 42 clinic locations across the northwest region of the U.S. The Cancer Survivorship Clinic is dedicated to providing evidence-based cancer care accessible for all diagnosed with cancer, particularly those in poor and vulnerable populations. The clinic provides ongoing educational sessions for healthcare professionals on survivor care plans and other survivorship issues within the Providence healthcare system.

Discussion
The five programs highlighted here have done unique and innovative work to address the needs of cancer survivors within their population. The activities presented in this report provide both examples of activities and methods for implementation that may be replicated by other NCCCP grantees. Some common themes are apparent in the highlighted survivorship activities. First, prior to implementation, several grantees had discussions with various stakeholders and sought out and established local partnerships to assist with implementation. These partners appear to be instrumental in the design and initiation of the activities. Additionally, several grantees saw a need to focus on activities related to survivorship care plans. This focus was based on both recommendations and demonstrated population needs.
Partnerships are a cornerstone of public health practice and have been used effectively to address many areas in cancer, including receipt of cancer screening 8-10 and treatment. 11,12 The NCCCP has a long history of partnering with governmental and non-governmental organizations to achieve common goals and initiatives. The Comprehensive Cancer Control National Partnership, a network established to assist the NCCCP, contains 15 partners that voluntarily develop strategies and resources to support implementation of cancer control plans across the nation. 13 This National Partnership includes the National Cancer Institute, the American College of Surgeons Commission on Cancer, the American Cancer Society, and Livestrong Foundation, among others. 13 Though the national partners offer much support, partnering locally with academic institutions, cancer centers, and other health networks as the grantees did in this study are also effective ways of moving activities forward. Local partners may have more-specific goals that align directly with those of the grantee, and also may help with access to additional financial resources that may be necessary for NCCCP grantees to achieve success.
Survivorship care plans are an increasingly relevant area in survivorship, and it is therefore not surprising that several grantees have activities related to them. A seminal report released by IOM in 2005 recommended that survivorship care plans be developed and used as a tool to communicate and coordinate survivorship care. 2 In this report, the care plan was promoted in the report as a means to deliver patient-centered care by enhancing communication between the oncology team and the patient, as well as communication and coordination of care between the oncology team and the primary care provider. IOM provided a comprehensive list of components to be included in the survivor care plan, covering both the treatment summary and follow-up care plan. 2 However, to date, there has been limited success in implementing care plans in oncology practice, which may be related to the time-consuming process of completing a care plan, or the lack of a universally accepted care plan model. 14,15 A recent review noted that only 43% of National Cancer Institute-designated cancer centers present survivor care plans to their breast or colorectal cancer survivors and none of these address all components recommended by IOM. 16 In order to improve care plan development and use, the American Society of Clinical Oncology released an expert statement in 2014 to help clinicians recognize the importance of developing patient-centered care plans and delivering the information to both the patient and primary care providers. 15 Additional research to improve the practice and use of care plans is needed, however, and CDC and others are actively involved in care plan research. In the meantime, the efforts of New Mexico and Washington state presented here demonstrate that local partnerships can help with the development and dissemination of care plan information. The community and clinical partnerships outlined in this report have demonstrated effective and appropriate delivery of information to survivors.
Addressing cancer survivor needs remains a central goal of the NCCCP. In an effort to increase the number of grantees implementing evidence-based survivorship interventions and build upon the successes of the programs highlighted here, CDC recently provided additional funding to a subset of NCCCP grantees for survivorship activities related to surveillance, survivorship care plans, patient navigation, and provider education. 17 As the U.S. survivor population increases, the widespread adoption and sustainability of these efforts will become necessary. Projects that include the collection of information regarding the resources needed for sustainable survivorship efforts, including staffing, financial, and partner resources, will be necessary to ensure the continued survivorship efforts. Additional research in the economic impact of and best practices for survivorship activities will also be very valuable in ensuring that resources are maximized.

Strengths and Limitations
This study has several strengths and limitations. One strength is the focus on work that was actually implemented and in practice, as opposed to planned or in theory, and the direct access of programmatic staff for information contained in this report. Another strength is the geographic and racial variation of the programs chosen for highlighting, which assist with the application of our findings. A limitation of the study is the use of written reports (action plans) to select the programs for inclusion. Because these plans may not fully and accurately characterize the activities implemented, it is possible that the authors missed some key activities worth highlighting in this report.

Conclusions
Nearly all NCCCP grantees have acknowledged the importance of addressing needs among cancer survivors, and are actively working to provide assistance to the growing survivor population. This report provides specific, implemented examples for incorporating cancer survivorship activities within programs of various sizes and resource capacity. New Mexico, South Carolina, Vermont, and Washington states and the Fond Du Lac Tribe all developed innovative, creative cancer survivorship activities that met CDC and other nationally recognized recommendations. These activities provide a roadmap for other NCCCP grantees and public health programs working in cancer survivorship to assist with meeting the needs of their specific survivor populations.

Supplementary Material
Refer to Web version on PubMed Central for supplementary material.    Table 3.

Main Findings of Vermont's Survivor Focus Group Study Support
The most predominant theme throughout the various threads of the focus group study is that support plays a critical role for cancer survivors. Support from other cancer survivors is especially important. Connecting with other survivors, both through support groups and one-to-one contact, provides opportunities to give and receive emotional support and to exchange information. Despite its importance, the need for peer support is being poorly met in the state.

Information
The majority of focus group participants described a profound and ongoing desire for information. Information needs change over time as individuals move through the stages of survivorship. Survivors want to have information offered to them rather than always having to search for it. Survivors have concerns about the reliability of the information they find on their own, particularly on the Internet. Information about diagnosis and treatment options is more readily available than information about "everything else," and information and resources related to less common cancers can be hard to find.
Transitions and emotional wellbeing Transitions frequently present emotional challenges for cancer survivors. The end of treatment was well-being experienced as a difficult and sometimes frightening transition, even when outcomes are positive. The end of an active relationship with an oncologist often leaves survivors feeling that they have been cast adrift, a situation that is compounded by a lack of discharge planning that could smooth the transition to post-care. Survivors are generally surprised by the depression and anxiety that occurs during these transitions because they are rarely advised that a period of emotional adjustment is common. Survivors report that their doctors rarely open the door to discussion of emotional issues, and survivors would like them to do so. Emotional support and counseling, like information, needs to be offered on an ongoing basis as individualsʼ needs change. Practices such as meditation, yoga, and spiritual practices are found to be useful by many survivors.