Most cancer organizations define a survivor as anyone who has had a diagnosis of cancer. From the moment of hearing the words "You have cancer" through the remainder of their lives, cancer patients are considered to be survivors. In the United States, half of all men and one third of all women will develop cancer in their lifetimes. Advances in cancer treatment have facilitated long-term survival in many patients with various tumor types.1 Combined with an aging population, these advances mean greater numbers of cancer survivors in the near future. In particular, the prevalence of CRC is estimated to increase to nearly 1.5 million patients between 2000 and 2020, largely because of the aging of the US population.2
From Hede,3 with permission.
Issues in Survivorship Care
The transition from active treatment to survivorship care is critical to the long-term health and well-being of people with cancer. Cancer survivors face medical, psychosocial, and economic issues. Survivorship is a distinct phase of the cancer trajectory, with unique needs—including survivorship education, guidelines, and quality measures—requiring specific interventions. Although many organizations are beginning to investigate and plan for cancer survivors’ needs, no specific guidelines exist.
Many cancer patients return to the care of their internist or family practice physician following cancer treatment. Primary care physicians and other health care providers, who are often unfamiliar with the consequences of cancer and its treatment, may not receive explicit guidance from oncologists. Furthermore, the lack of clear evidence for what constitutes best practice in caring for cancer survivors contributes to a wide variation in care. The extended health care team—the medical oncologist, oncology nurse, primary care physician, cancer survivor, and caregivers—need to be involved in the care plan for the cancer survivor.
Recommendations for Survivorship Care
Institute of Medicine Recommendations
Several patient advocacy organizations have published recommendations for cancer survivorship care. In 2005, the Institute of Medicine (IOM) published From Cancer Patient to Cancer Survivor: Lost in Transition,4 a report advocating that the medical oncologist provide a unique care plan for each cancer survivor at the completion of cancer therapy. IOM recommends that “survivorship care plans” should summarize information critical to the individual's long-term care, such as
- Cancer diagnosis, treatment, and potential consequences
- Timing and content of follow-up visits; tips on maintaining a healthy lifestyle and preventing recurrent or new cancers
- Legal rights affecting employment and insurance
- Availability of psychological and support services
The committee's findings and recommendations in this report are directed toward cancer patients and their advocates, health care providers and their leadership, health insurers and plans, employers, research sponsors, and the public and their elected representatives. A brief summary of the IOM recommendations for a survivorship care plan can be downloaded at http://www.iom.edu/CMS/28312/4931/30869/30879.aspx. Accessed December 14, 2010.
Philadelphia Nurses Symposium Recommendations
In July 2005, a symposium of nurses was convened in Philadelphia to develop nursing research priorities and recommendations for clinical care, education, and policy related to nursing care for cancer survivors. The group identified barriers to optimal care and developed recommendations for a nursing research agenda in 3 categories: knowledge deficits, health care system barriers, and cost considerations. Nursing research priorities include outcomes of long-term survivors, access to care, education, and dissemination of information.5
National Action Plan for Cancer Survivorship: Advancing Public Health Strategies
This plan results from a collaborative effort of the Centers for Disease Control and the Lance Armstrong Foundation to address issues faced by the growing number of cancer survivors. Representing the effort of 100 experts in cancer survivorship and public health the National Action Plan identifies and prioritizes cancer survivorship needs and proposes strategies for addressing those needs within 4 core public health components:6
- Surveillance and applied research
- Communication, education, and training
- Programs, policies, and infrastructure
- Access to quality care and services
A free summary of the National Action Plan and a link for ordering a full-text version (fee) are available at http://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/action_plan_download.htm. Accessed December 14, 2010.
There are no specific medical guidelines for cancer survivorship.
Oncology Nursing Society (ONS)
ONS provides links to survivor patient education materials at http://www.thecancerjourney.org/survivor. Accessed December 14, 2010.
The National Coalition for Cancer Survivorship (NCCS)
The NCCS Web site (http://www.canceradvocacy.org//) provides a link (http://www.cancersurvivaltoolbox.org//) to the Cancer Survival Toolbox, a free audio program to provide cancer survivors and caregivers with skills to deal with diagnosis, treatment, and the challenges of living with cancer. The Cancer Survival Toolbox can be ordered by phone at 1.877.TOOLS.4U. NCCS also has a patient advocacy program, Cancer Advocacy Now!, to ensure that America’s 10 million cancer survivors and the millions more who care for them have a voice in advocating for quality cancer care. NCCS can also be reached at 877.NCCS.YES. Links accessed December 14, 2010.
American Society of Clinical Oncology (ASCO)
ASCO maintains a Web site for cancer survivors, People Living With Cancer (PLWC), available online at http://www.plwc.org/portal/site/PLWC. Information on survivor issues, links to other ASCO Web pages, and a monthly e-mail newsletter are available. Accessed December 14, 2010.
Colon Cancer Alliance (CCA)
The CCA Web site (http://www.ccalliance.org//) provides information specific to CRC, sponsors 1-day CRC information seminars across the country, and has links to resources for CRC survivors. CCA also has a weekly online chat for CRC survivors and caregivers and a peer support program, the Buddy Network. Information on the Buddy Network is available at http://www.ccalliance.org/notalone_helpline.html and http://www.ccalliance.org/notalone_buddy.html. Links accessed December 14, 2010.
Centers for Disease Control (CDC)
The CDC has a cancer survivorship program with links to resources at http://www.cdc.gov/cancer/survivorship/links.htm. Accessed December 14, 2010.
- Boyle DA. Survivorship [book excerpt]. Clin J Oncol Nurs. 2006;10:407-421. Full-text link available at: http://ons.metapress.com/content/b8v51830p5p1m2p2/fulltext.pdf. Accessed December 14, 2010.
- Mariotto AB, Yabroff KR, Feuer EJ, et al. Projecting the number of patients with colorectal carcinoma by phases of care in the US: 2000-2020. Cancer Causes Control. 2006;17:1215-1226. Link to abstract available at: http://www.springerlink.com/content/k32h6v7677171135/. Accessed December 14, 2010.
- Hede K. Living well post-cancer: care planning for survivors. J Natl Cancer Inst. 2006;98:1514-1515.
- Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2005.
- Houldin A, Curtiss CP, Haylock PJ. Executive summary: the state of the science on nursing approaches to managing late and long-term sequelae of cancer and cancer treatment. Am J Nurs. 2006;106(suppl 3):6-11.
- Web site of the US Dept of Health & Human Services, Centers for Disease Control. Cancer survivorship. Available at: http://www.cdc.gov/cancer/survivorship/basic_info/. Accessed December 14, 2010.
advocacy—intervening on behalf of another; representing the cause or interest of another; the act or process of defending or maintaining a cause or proposal. An organization may have advocacy as its mission (or part of its mission) to increase public awareness of a particular issue or set of issues.
applied research—scientific study that seeks to solve practical problems. Applied research is used to find solutions to everyday problems, cure illness, and develop innovative technologies.
infrastructure—the basic structure or features of a system or organization; facilities, resources or networks that form the basic framework of a system; physical assets and staff to support research.
prevalence—the percentage of a population that is affected with a particular disease at a given time
surveillance—close and continuous observation or testing
Linda Penwarden, RN, MN, AOCN®, Clinical Nurse Specialist, St Luke's Mountain States Tumor Institute, Boise, ID.
Susan Moore, RN, MSN, ANP, AOCN®, Chairperson, www.manageCRC.com Advisory Panel, oncology nurse practitioner and oncology practice consultant, Chicago, IL.