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What CDC is Doing

As the population of cancer survivors continues to grow, the public health community is considering ways to address the issues related to survivorship. The Centers for Disease Control and Prevention (CDC) works with national, state, tribal groups, territories, Pacific Island Jurisdictions, and local partners to create and implement successful strategies to help the millions of people in the United States live with, through, and beyond cancer.

The term "cancer survivors" refers to individuals who have been diagnosed with cancer and the people in their lives who are affected by the diagnosis, including family members, friends, and caregivers.

Accomplishments

In 2004, CDC and the Lance Armstrong Foundation, along with nearly 100 experts in cancer survivorship and public health, released A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. This collaboration articulated goals, activities, and resources to address the issues facing the growing number of cancer survivors in the United States.

CDC has joined forces with national organizations, states, tribes, territories, and Pacific Island Jurisdictions to address several of the cancer survivorship "priority needs" cited in the Action Plan. This work includes efforts to understand and improve quality of life and end-of-life support for cancer patients, their family, friends, and caregivers, as well as initiatives to increase survivorship in underserved populations.

CDC has supported organizations and projects such as:

• The Patient Advocate Foundation, which provides case management to cancer survivors to ensure their finances, employment, and medical treatments are not interrupted by poor or slow insurance reimbursement or employment status.
• The Emmy^® Award-winning Public Broadcasting Service film, A Lion in the House, a documentary that raises awareness about the challenges facing child and young-adult cancer survivors.
• The Lance Armstrong Foundation's LIVESTRONG SurvivorCare program, as well as education and outreach material for various population groups.
• The National Marrow Donor Program and the National Coalition for Cancer Survivorship; both are creating educational resources for hematologic cancer survivors.
• SuperSibs! provides support services to siblings of children with cancer, their families, and educators.
• Providing technical assistance, resources, partnerships, and guidance to Comprehensive Cancer Control programs and coalitions as survivorship-related activities are initiated, including creating survivorship-related cancer plan objectives, statewide survivorship resource guides, and conference support.

Research conducted by CDC investigators has shown that:

• Many providers may miss opportunities to counsel survivors about healthy behaviors.¹
• Unmet medical care needs are common among survivors because of cost, particularly among those who are uninsured.²
• Various organizations and programs are striving to address the needs of cancer survivors through public health planning, yet challenges exist in understanding and serving survivors.^{3 4}
• The experience of having a potentially life-threatening illness can lead to positive adaptation and increased ability to thrive, despite difficult circumstances.⁵
• Survivors often have difficulty finding information to address their social and financial concerns after cancer diagnosis and treatment. Patients desire clear and easy-to-follow information on the long-term implications of treatment and disease.⁶

These and other public health efforts that address cancer survivorship support CDC's overarching goal of healthy people in every stage of life. They also address the U.S. Department of Health and Human Services' Healthy People 2010 goal of increasing to 70% the proportion of cancer survivors who live 5 years or longer after diagnosis.

Ongoing Work

CDC's cancer survivorship activities include:

• Developing cancer survivorship questions for inclusion in population-based national surveys such as the Behavioral Risk Factor Surveillance System (BRFSS) and National Health Interview Survey (NHIS) to assess the burden of cancer survivors and to plan, implement, and evaluate cancer control strategies.
• Studying various aspects of survivorship including:



• Identifying the barriers to receiving appropriate follow-up care and practicing healthy behaviors after cancer treatment.
• Evaluating the effectiveness of a nationally available survivorship program on improving quality of life, facilitating decision-making, attitude, and perceived need for information among a disadvantaged population.
• Characterizing the specialty of physicians who provide care to older cancer survivors.
• Determining quality of life related to men's choice in prostate cancer treatment.
• Supporting the development and distribution of a broad range of cancer survivorship informational materials through the LIVESTRONG National Cancer Survivorship Resource Center. Materials for cancer survivors, including their family members, friends, and caregivers, address the physical, emotional, and practical issues that may arise after a cancer diagnosis:



• LIVESTRONG: A Podcast Series for Young Adults with Cancer.* Each video is 5 to 7 minutes long and relays important information about common physical, emotional, and practical concerns, and addresses the unique needs of young adults with cancer.
• The Living After Cancer Treatment brochure series* is an introduction to survivorship that is culturally relevant and easy to read.
• The LIVESRONG Survivorship Notebook* features printed versions of the information, worksheets, and stories online that can be put in a three-ring binder.
• On the Lance Armstrong Foundation Cancer Support Web site,* people can read about their cancer concerns and learn what to expect during their cancer experience, what questions to ask, and where to find help.
• The Lance Armstrong Foundation developed a Web site in Spanish.*
• The Lance Armstrong Foundation's LIVESTRONG AT SCHOOL curriculum* provides kindergarten through high school professionals with a way to teach about cancer that is age-appropriate and empowering.
• The Lance Armstrong Foundation's SurvivorCare program* offers one-on-one counseling services and help with financial, employment, or insurance concerns, as well as information about treatment options and connecting to new treatments in development.
• Funding nine national organizations to develop and share information that will enhance the quality of life and knowledge about hematologic (blood) cancers for cancer survivors, family, caregivers, and the medical community.

Future Directions

CDC would like to expand its research and programmatic initiatives to meet the emerging challenges of cancer survivorship by:

• Assisting states, tribal groups, territories, and Pacific Island Jurisdictions in their efforts to address cancer survivorship through Comprehensive Cancer Control initiatives.
• Developing ways to evaluate success in improving survivorship.
• Enhancing resources, partnerships, and coordination among national and community organizations that serve survivors, including their family members, caregivers, and health care providers.
• Examining the development and impact of post-treatment care plans for cancer survivors.
• Investigating factors which impact receipt of appropriate follow-up care among cancer survivors.

References

¹Sabatino SA, Coates RJ, Uhler RJ, Pollack LA, Alley LG, Zauderer LJ. Provider counseling about health behaviors among cancer survivors in the United States. Journal of Clinical Oncology 2007;25(15):2100–2106.

²Sabatino SA, Coates RJ, Uhler RJ, Alley LG, Pollack LA. Health insurance coverage and cost barriers to needed medical care among U.S. adult cancer survivors age <65 years. Cancer 2006;106(11):2466–2475.

³Pollack LA, Greer GE, Rowland JH, Miller A, Doneski D, Coughlin SS, Stovall E, Ulman D. Cancer survivorship: A new challenge in comprehensive cancer control. Cancer Causes and Control 2005;16(S1):51–59.

⁴Centers for Disease Control and Prevention. Cancer survivorship—United States, 1971–2001. MMWR 2004;53:526–529.

⁵Coughlin SS. Surviving cancer or other serious illness: a review of individual and community resources. CA: A Cancer Journal for Clinicians 2008;58(1):60–64.

⁶Hawkins NA, Pollack LA, Leadbetter S, Steele WR, Carroll J, Dolan JG, Ryan EP, Ryan JL, Morrow GR. Informational needs of patients and perceived adequacy of information available before and after treatment of cancer. Journal of Psychosocial Oncology 2008;26(2):1–16.

*Links to non-Federal organizations found at this site are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. CDC is not responsible for the content of the individual organization Web pages found at these links.