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From Cancer Patient to Cancer Survivor: Lost in Transition
Making Investments in Research
Within the past decade, a focus for federally sponsored research has been organized within NCI’s Office of Cancer Survivorship. Findings from this first era of dedicated research have informed much of this report. A greater investment in research is needed to learn more about late effects and their management. Cancer treatments are constantly evolving, and consequently, what is known about today’s cancer survivors may not be relevant to future patients. Newer therapies hold the promise of limiting the late effects of cancer, but mechanisms to monitor long-term effects need to be put in place. Also needed are studies to determine how best to detect and treat cancer recurrence, new primary cancers, and other late effects. Providers responsible for follow-up need to know which tests to use, how often to use them, and the relative costs and benefits of alternative surveillance strategies. Investments are needed in the science on which clinical decisions must be based.
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, and emerging problems associated with compliance with privacy provisions of the 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 Reseach 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 health insurers and plans should increase their support of survivorship research and expand mechanisms for its conduct. New research initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care.
Research is especially needed to improve understanding of:
Mechanisms of late effects experienced by cancer survivors and interventions to alleviate symptoms and improve function;
The prevalence and risk of late effects;
The cost-effectiveness of alternative models of survivorship care and community-based psychosocial services; and
Interventions to improve the quality of life of cancer survivors, their families, and caregivers.