Co-sponsored by: The Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI), National Institutes of Health (NIH), and the Behavioral Research Program, American Cancer Society (ACS)
The American Cancer Society and the National Cancer Institute’s co-sponsored meeting, Cancer Survivorship: Pathways to Health After Treatment, was held at the Marriott Wardman Park Hotel, in Washington, DC. The meeting was attended by researchers across multidisciplinary fields, health care professionals, federal scientists, community-based advocates, state public health planners, and cancer survivors and their families.
Currently, 9.8 million cancer survivors reside in the United States, accounting for 3.5 percent of the population. Among all cancer survivors in 2001, an estimated 14 percent had received a cancer diagnosis >20 years ago. The increasing number of cancer patients achieving long-term survival emphasizes the need for a national agenda to support further research and improved followup of patients, aimed toward understanding the long-term physical, psychosocial, and economic effects of cancer and its treatment. Current research findings in the areas of: (1) long-term and late effects of cancer and its treatment, (2) status of intervention research (including the promotion of health behaviors after cancer), (3) national priorities in cancer survivorship, and (4) the individual and societal burden of cancer survivorship were presented.
I. Post Treatment Health: The Landscape
Late effects (i.e., complications or adverse medical/health outcomes) as a result of cancer and its treatment can occur shortly after treatment or many years later, and may affect virtually all body systems, with long-term negative consequences for patients’ survival and quality-of-life. The risk of long-term effects of cancer treatment is influenced by multiple factors including the age of the patient, type of cancer, and type of treatment received; the degree of risk to an individual patient cannot be precisely predicted. For survivors of childhood cancer treatment, radiation therapy and certain chemotherapies (i.e., alkylating agents and topoisomerase inhibitors) are important determinants that may cause severe long-term damage. Cancer treatments can affect vital organ function (e.g., heart, kidney, endocrine), and lead to increased risk of developing second cancers. While, late effects such as fatigue, diminished memory and concentration function, and fertility and reproduction dysfunction are not life-threatening, they can seriously affect survivors’ health and quality-of-life. Research designed to understand the causes of, and risk factors for, long-term effects can result in changes in treatment plans to lessen the negative consequences of cancer therapy. Future studies will need to examine the interaction between treatment, genetics, medical co-morbidities, and lifestyle choices.
II. Post Treatment Health: The Current State of Interventions
As intervention research advances in the field of cancer survivorship it is important to provide a framework for summarizing accomplishments and identifying challenges and opportunities in addressing problems of cancer survivors. Researchers should consider how the problem is being defined, how the problem is being measured, and how the occurrence of the problem is being studied. Some delayed effects of cancer treatment may not be life-threatening, but nonetheless lead to decreased quality-of-life. Fatigue, in particular, is a problem for many cancer survivors and can interfere with their usual activities and affect social interactions, physical well-being, and job performance, sometimes with serious economic consequences.
Encouraging healthy behaviors, including better diet and exercise, and discouraging unhealthy behaviors such as smoking, is likely to improve cancer survivors’ quality-of-life and may even prolong survival. Up to 85 percent of cancer patients report interest in adopting healthy eating patterns, and although little evidence links healthy eating with disease-free survival, striving for and maintaining a healthy weight is likely to have a positive effect on overall health. Exercise also should be promoted in cancer survivors; many cancer patients do not exercise as much during treatment as they did before diagnosis, and even after treatment is complete may fail to resume pretreatment levels of activity. Oncologists can help promote exercise in cancer survivors; studies show that patients are more likely to exercise when they are encouraged to do so by their oncologists. Lastly, cancer survivors are at increased risk for negative effects of smoking, which can cause serious health problems for survivors because it worsens the function of already weakened hearts and lungs. Programs have been developed to help cancer survivors quit smoking, and should be an important part of survivor education and followup care.
III. National Priorities in Cancer Survivorship
With more and more people surviving cancer, it becomes important to develop national priorities designed to improve the overall experience and quality-of-life of Americans living with, through, and surviving cancer. The President’s Cancer Panel 2003 Annual Report, Living Beyond Cancer: Finding a New Balance, includes general recommendations to address the needs of cancer survivors across the developmental lifecycle. Recommendations highlighted in the report include patient access to records of care received and information concerning important disease characteristics, followup care plans for each patient, counseling about common physical and psychosocial after-effects of cancer and its treatment, referrals to support groups and other supportive and educational services, and creation of a nationwide electronic health records system by a consortium established by the Department of Health and Human Services. The report also identified issues of interest to specific age groups.
Although survival rates for childhood cancers have increased over the past decades, two-thirds of childhood cancer survivors suffer from at least one delayed effect of cancer treatment, and one quarter of these are serious or life-threatening. A recent report by the Institute of Medicine (IOM), Childhood Cancer Survivorship: Improving Care and Quality of Life, showed that these patients often are lost to or receive inadequate or unsystematic followup care, and that access to followup care can be problematic because insurance often does not adequately cover cancer survivors and their special health and service needs. The IOM report contains detailed recommendations to improve followup care and access to care for childhood cancer survivors.
Finally, cancer survivorship is increasingly seen as a public health issue. With this in mind, a priority for the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention (CDC), is to develop greater awareness among the general public, policymakers, researchers, advocates, and survivors of the role public health can play in advancing cancer survivorship issues.
IV. Projecting the Burden of Cancer Survivorship: Individual and Societal
Cancer places a significant economic burden on society, with the average cost of treatment for all cancer patients in the United States reaching approximately $172 billion per year. This number does not, however, take into account economic costs over the entire range of cancer treatment, including the years of survivorship. Determining the true effects of cancer on the labor market is difficult because individuals without cancer also continually move in and out of the workforce. Measuring “incidence costs,” which reflect the changing pattern of costs over the course of the disease, and “time costs,” which reflect the value of patient time spent undergoing treatment instead of engaging in other activities, will help to more accurately describe the economic costs of cancer, particularly those associated with survivorship. The increasing numbers of Americans aged 65 or older (expected to be 1 in 5 by 2030) also is likely to increase the economic burden of cancer. People in this age group account for 57 percent of cancer cases and 71 percent of cancer deaths. They also are more likely to suffer from other illnesses and health problems alongside the cancer, and face special challenges to receiving care, due to physical or psychological problems of their caregiver spouses as well as limited finances, hampering their ability to receive assistance.