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From Cancer Patient to Cancer Survivor: Lost in Transition
for cancer survivorship research, has distributed an estimated $28 million in research funds to date. The Office of Cancer Survivorship oversees a small grant portfolio and leverages resources from other parts of NIH to encourage survivorship research. Additional support for clinical survivorship research has been available through the NCI’s Clinical Trials Cooperative Group Program, but the level of such support, while difficult to gauge, appears to be low. These groups represent important opportunities to evaluate the consequences of contemporary cancer treatments. CDC’s new focus on survivorship and public health and AHRQ’s focus on cancer among Medicare beneficiaries could lead to increased research support related to cancer survivorship. Other federal support is available for survivorship research through the DoD’s extramural grant programs. In terms of private resources for research, the ACS has invested in large survivorship cohort studies; the Lance Armstrong Foundation is building on its portfolio of survivorship research; and other private foundations are supporting research on survivorship issues relevant to their constituencies.
FINDINGS AND RECOMMENDATIONS
In summary, cancer survivorship research has emerged as a unique area of inquiry covering areas such as clinical late effects, psychosocial adjustment, and quality of care. The field is by nature interdisciplinary and includes investigators in nursing, clinical medicine, epidemiology, and health services research. Within the past decade, a focus for federally sponsored research has been organized within the NCI. Findings from this research have informed much of this report. Investigators have used several mechanisms to conduct survivorship research, including focus groups and other qualitative methods, clinical trials, cohort studies, cancer registries, administrative data, and surveys. Among the challenges to conducting survivorship research are the difficulties and costs associated with long-term follow-up, the complexities of accruing sufficient sample sizes through multi-institutional research endeavors, changes in treatment and the latency to recognition of late effects, and emerging problems associated with compliance with HIPAA. Survivorship research is funded at relatively modest levels within both public and private sectors, especially as contrasted to levels of support for treatment-related research.
Recommendation 10: The National Cancer Institute (NCI), Centers for Disease Control and Prevention (CDC), Agency for Healthcare Research and Quality (AHRQ), Centers for Medicare and Medicaid Services (CMS), Department of Veterans Affairs (VA), private voluntary organizations such as the American Cancer Society (ACS), and private