The Evolving Paradigm of Adult Cancer Survivor Care

Current US statistics on cancer reveal that more than 11 million cancer survivors live among us today, and that number is expected to double by 2050.[1,2] One important contributing trend has been a fall in cancer deaths driven by earlier detection and improved treatment. Deaths resulting from cancer declined from 206.7 per 100,000 population in 1980 to 185.7 per 100,000 in 2004. Meanwhile, the adjusted 5-year survival rate for cancers overall increased from 50% to 66% between 1975–1977 and 1996–2003,[3] and these statistics speak only to relatively short-term survival. About 1 in every 7 survivors today received their diagnosis more than 20 years ago.[4]

A second trend is related to changes in the age distribution of our population. In 1990, approximately 40% of the population was younger than age 35. By 2010, the majority of the population will be age 45 or older. Cancer occurs more commonly among older adults, and with greater numbers of people receiving cancer diagnoses and treatment, the percentage of survivors in this age-group has increased. In fact, 60% of cancer survivors are aged 65 years or older (see Figure 1).

For these 11 million survivors, cancer is considered a chronic disease, in which long-term and late effects of treatment are overlaid with the potential for exacerbations and remissions. These events can be life-altering—both for survivors and for their families and caregivers. Most cancer survivors do very well once cancer treatment has ended, but there are potential sequelae that include impaired physical function, reduced fertility, neurocognitive deficits, chronic symptoms such as pain and fatigue, elevated risks of second malignancies and other treatment-induced conditions (eg, cardiovascular disease, osteoporosis), and psychosocial morbidity and the fear of recurrence.[5–7] Compounding these issues may be concerns about employment and health insurance coverage.[8–10]

It is increasingly recognized that cancer survivors have complex and ongoing needs for education, surveillance, screening, and support. The medical community must consider plans of care that encompass follow-up and monitoring for effects of cancer treatment; surveillance for recurrent or new cancers; and health promotion strategies (see Figure 2).[11–13] Clearly, as Julia Rowland, PhD, the director of the National Cancer Institute (NCI) Office of Cancer Survivorship (OCS), states, “disease-free does not mean being free of your disease.”[13]

History of the Survivorship Movement

The initial impetus for a cancer survivorship movement was the increasing survival of patients with a disease that historically had been rapidly and almost universally fatal. Gains achieved have been largely due to improvements in screening, early detection, and treatment; better control of adverse effects (enabling receipt of higher doses of therapies more likely to be effective); and the advent of targeted therapies.[4]

Not surprisingly, survivors and their families and caregivers spearheaded many early efforts to improve outcomes after a cancer diagnosis, and continue to be active today. Nationally, private and governmental entities further advanced the survivorship movement (see Figure 3). Their research, recommendations, and collaboration have given rise to the evolving paradigm of health care for cancer survivors seen today. In particular, these activities have been critical in uncovering deficits in care, leading to new proposed models of care, and identifying key areas for research.

Cancer Care

A private, national nonprofit organization founded in 1944, CancerCare provides free professional support services to anyone affected by cancer. CancerCare services include telephone as well as web-based education for both patients and professionals, and its focus now includes support for survivors.[14]

American Cancer Society

The American Cancer Society (ACS) is the oldest voluntary health agency dedicated to conquering cancer through research, education, advocacy, and service. Development and distribution of patient education materials has been a major activity since its inception in 1946. The first Survivor Bill of Rights was published by the ACS in 1988. “Reach for Recovery” and “I Can Cope” are examples of well-established ACS programs available through 13 divisions and 3,400 local ACS offices nationwide.[15] The ACS reaches out through its online Cancer Survivors Network, “created by and for cancer survivors and their loved ones.”[16]

The Wellness Community

The Wellness Community, an international nonprofit organization, was founded in California in 1982 by Harold Benjamin, PhD, as a result of his wife’s experience with breast cancer.[17] His interest in the psychological and social impact of cancer led to the development of the Patient Active Concept, in which care is built around the idea of community. Services include networks providing web-based access to support groups and local support offices with many additional resources and programs. As explained on The Wellness Community’s web site, “Through participation in professionally led support groups, educational workshops, nutrition and exercise programs, and mind/body classes, people affected by cancer learn vital skills that enable them to regain control, reduce isolation, and restore hope regardless of the stage of their disease.” There are 24 Wellness Communities in the US, 56 satellite and off-site programs, 2 centers elsewhere (in Tel Aviv and Tokyo), 3 centers now being planned, and the online Virtual Wellness Community.

National Coalition for Cancer Survivorship

One of the earliest organizations to address advocacy issues was the National Coalition for Cancer Survivorship (NCCS), founded in 1986 by a group of cancer survivors and health professionals. The NCCS is the oldest survivor-led cancer advocacy organization in the US. Founding members were pioneers advocating for health-care coverage and increased access to new treatments for cancer patients.

Importantly, NCCS broadly defines the period of cancer survivorship as starting “from the time of its discovery and [extending] for the balance of life.”[13] It does not differentiate patients in active treatment from those who are disease-free or who have end-stage disease, thus helping to focus on the activities, facilities, personnel, and research needed to improve support for all individuals following a cancer diagnosis.[18]

The NCCS advocates for systemic change at the national level to improve cancer care. Its Cancer Advocacy Now legislative advocacy network mobilizes constituents on cancer-related issues. The NCCN is also committed to patient education; it offers the Cancer Survival Toolbox, a free online audio program covering basic skills related to challenges survivors face (eg, finding information, making decisions, and paying for care) and Cancer Keys to Survivorship, a free educational program that addresses additional skills needed after a cancer diagnosis (eg, communicating with providers, self-advocacy, handling fatigue, employment rights, and health insurance).