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Addressing the Burden of Suffering Due to Cancer

Julia H. Rowland, PhD, Director, Office of Cancer Survivorship

Once almost uniformly fatal, cancer has become for many a chronic illness and, for growing numbers of people, a curable disease. In the absence of other competing causes of death, current figures indicate that for adults diagnosed today, 66 percent can expect to be alive in five years. Almost 80 percent of childhood cancer survivors will be alive at five years, and 10-year survival is approaching 75 percent. As past and future advances in cancer detection, treatment, and care diffuse into clinical practice, and with the aging of the population, the number of survivors can be expected to increase.

The steadily increasing number of cancer survivors is a testament to the many successes achieved by NCI. At the same time, this population of survivors, currently estimated to be 10.5 million in the United States, represents a clear challenge to NCI. These individuals and their family members serve as a reminder that we have an obligation to look beyond the search for a cure and provide hope for a valued future to those living with and beyond a cancer diagnosis.

The year 2006 marks the tenth anniversary of the Office of Cancer Survivorship (OCS), which was established by NCI to formalize its commitment to better understand and address the unique needs of all cancer survivors. In the last decade, survivorship research has been growing in prominence in the cancer research agenda. There has been an almost five-fold increase in NIHfunded grants in cancer survivorship—and most of these are housed within the OCS. The rapid growth of grant applications in this area reflects the awareness in the investigator community of the critical need for data on survivor outcomes. It also is a reflection of OCS’s achievements in shepherding the science of survivorship.

Looking forward, it is clear that research is needed in several important arenas. First, more descriptive and analytic epidemiologic research is needed on the chronic and long-term impact of cancer on survivors. Few of our current cancer treatments are benign; most carry the potential to cause adverse long-term and late effects. As children and adults with a history of cancer live longer, and data from research studies supported by NCI mature, more of these risks are being documented and reported. Among these risks are neurocognitive problems, premature menopause, cardiorespiratory dysfunction, sexual impairment, infertility, chronic fatigue and pain syndromes, and second malignancies. Research shows that many survivors also experience significant negative psychosocial outcomes: fear of recurrence, poor self-esteem, anxiety and depression, employment and insurance discrimination, and relationship difficulties. It is clear that for those who are post-treatment, being diseasefree does not mean being free of their disease. Access to information about treatment-related risks is critical if we are to help patients and their health care providers negotiate the treatment decision making process.

A second vital area is the development and application of interventions that will prevent or reduce the adverse sequelae of cancer and its treatment on survivors’ physical, psychological, and social functioning. Awareness within the investigator community of the importance of this research is reflected in the fact that almost 40 percent of the currently funded grants in the survivorship area contain an intervention component.

In addition to these two large areas of research focus, we have identified additional areas where we need to grow the science.

  • A focus on underserved and poorly studied populations of survivors. A number of recent reports highlight the unequal burden of cancer faced by those from low-income backgrounds, diverse ethnocultural minority groups, and rural communities. In addition, information about older survivors and those with some of the most common malignancies (e.g., colorectal cancer, gynecologic cancer, lymphoma) is also surprisingly limited.

  • Attention to economic outcomes, patterns of care, and service delivery. Research is needed on the impact of cancer on work, economic status, and insurability, and on the nature and impact of different patterns of followup care on survivors’ health status, morbidity, and mortality.

  • A focus on family. We are beginning to appreciate the impact of cancer on the functioning and well-being of the millions of family members affected by this illness, many of whom may themselves be at increased risk for cancer due to shared cancer-causing genes, lifestyle, and/or toxic exposures.

  • Instrument development. As survivors live longer, new instruments are needed that will enable us not only to describe more accurately the late effects of treatment, but also to compare the well-being of those with a history of cancer to that of their peers without such a history.

  • Education. As we learn more about the cancer survivorship experience and the interventions needed to optimize outcomes, we must find ways to communicate this knowledge to those who need it most: diverse health care providers, and survivors themselves. At the same time, we need to mentor and train the next generation of clinicians and researchers to develop, study, and deliver state-of-the-art cancer care.

  • Evaluation. Identifying appropriate methods and metrics for tracking our success in improving outcomes for all cancer survivors will be critical if we are to monitor progress in eliminating suffering and death due to cancer.

NCI will continue to guide and champion significant advances in our capacity to understand and enhance cancer survivorship. Through strengthening partnerships with professional and service delivery organizations and advocacy communities, our capacity to translate research from discovery to delivery will accelerate. The survivor community is strong and articulate and prepared to share the cutting-edge information generated by our research community.

Last Updated: April 13, 2007


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