Cancer Survivorship Research

Public Health Burden
Cancer is the second leading cause of death in the United States after heart disease. In 2013, it is estimated that nearly 1.66 million new cases of invasive cancer will be diagnosed, and more than 580,000 Americans will die of cancer.

Cancer Survivorship Research Overview
Advances in cancer detection, diagnosis, and treatment have led to improved cancer survivorship for millions of Americans. According to Surveillance, Epidemiology and End Results (SEER) statistics, there are nearly 14 million cancer survivors in the United States. This number is expected to grow to nearly 18 million by 2022. The National Cancer Institute defines a survivor as anyone who has been diagnosed with cancer; an individual is considered a cancer survivor from the time of diagnosis until the end of life. As many cancer survivors have learned, the end of treatment is not always the end of the cancer experience. Some cancer survivors experience long-term or late adverse outcomes of their cancer or its treatment. With more of those diagnosed with cancer living long-term after treatment, identifying models for follow-up care that maximize cancer survivors’ health and function and minimize over- or under-use of appropriate services is an important and growing area of focus.

How ARRA Funding Accelerated Cancer Survivorship Research
Appropriate follow-up care is critical to the long-term health of cancer survivors. Although guidelines regarding surveillance for cancer recurrence and monitoring of toxicities and late effects of treatment exist, cancer survivors do not always receive adequate follow-up care. Treatment summaries, which detail the treatments received by cancer patients, and survivorship care plans, including recommendations for follow-up care, are potentially important aspects of post-treatment long-term outcomes. However, treatment summaries have yet to be adopted widely or empirically investigated, in part because of a lack of methodology and outcome measures to assess their benefits. Led by Principal Investigator Dr. Brian Rivers, researchers at the H. Lee Moffitt Cancer Center are conducting survivorship research focused on developing and evaluating treatment summaries and survivorship care plans to address the long-term outcomes of patients with colorectal cancer.1

  • Assessment of Treatment and Survivorship Care Plans: ARRA supplemental funding allowed the Moffitt Cancer Center to hire additional staff and obtain resources to conduct a two-phase pilot study focused on developing methodology to assess the potential benefits of treatment summaries and survivorship care plans. In the first phase, the investigators solicited input from survivors and health care providers to identify outcome measures to use when evaluating the benefits of treatment summaries and survivorship care plans. In the second phase, the outcome measures developed and refined in phase one were examined for their ability to detect potential short-term benefits of providing a treatment summary and survivorship care plan to colorectal cancer survivors who had recently completed active treatment. Lessons learned from this and similar research are expected to lay the groundwork for long-term clinical use of treatment summaries and survivorship care plans.
In another ARRA-supported project, Principal Investigator Dr. Gerry Funk and researchers at the University of Iowa are investigating the long-term physiological consequences and late effects of treatment for head and neck cancer. A clear understanding of treatment-related effects will inform efforts to modify current treatment regimens and to develop interventions that lead to better long-term outcomes.
  • Identification of Barriers to Post-Treatment Health Care Utilization: ARRA supplemental funding was used to support the collection and evaluation of health care data from 5-year survivors of head and neck cancer and to identify barriers to post-treatment health care utilization. The supplemental funding enabled use of laptop computers for data acquisition and the hiring additional research staff, speeding data collection and analysis. Results of several studies conducted by the researchers indicated that lack of health insurance and of potential social support are major risk factors associated with delays in receiving needed care. The information gained from this supplemental grant about the ongoing health concerns of survivors and their health care utilization represents an essential first step in developing guidelines for efficient and effective follow-up care for the increasing numbers of head and neck cancer survivors.2
Survival rates for childhood cancers have increased dramatically over the past few decades due to more-effective therapies and the high participation of children with cancer in clinical trials. However, late effects of treatment (e.g., secondary cancers, cardiac failure) are substantial, accounting for one-quarter of deaths among childhood cancer survivors and pointing to the need for lifelong follow-up care. Principal Investigator Dr. Lisa Sharp and researchers at the University of Illinois at Chicago have developed the Childhood Cancer Survivor Program to Empower Action in Care and are conducting studies to determine the acceptability and feasibility of a community-based intervention to engage childhood cancer survivors more actively in follow-up cancer care.
  • Improving Education and Outreach to Adult Survivors of Childhood Cancer: ARRA supplemental funding allowed Dr. Sharp to work with the Health Communications Research Laboratory (HCRL) at Washington University in St. Louis to develop, refine, and produce tailored educational materials that inform adult survivors of childhood cancer about the importance of follow-up care. The supplement also provided funding for a graphic artist and content specialist to enhance the visual appeal and usability of the materials. In addition to completing the first draft of the education materials, Dr. Sharp was able to hire a part-time project coordinator who assisted in the completion of a pre-pilot test of the materials. The partnership with HCRL and the addition of extra staff substantially accelerated the pace of development and greatly improved the richness of the materials produced. The education materials will be tested to see whether they are successful in increasing these young survivors’ knowledge about, and likelihood of engaging in, follow-up care. Ultimately, development of successful education and communication interventions may help to decrease morbidity among adult survivors of childhood cancer.3

Contributing NIH Institutes & Centers

  • National Cancer Institute (NCI)