use. Information on noncovered services such as prescription drugs and long-term care is not yet available. The linkage was first completed in 1991 and has been updated most recently in 2003 (NCI, 2004e). The annual cost of maintaining the linked SEER-Medicare database is approximately $500,000.

State and Local Cancer Registries

State cancer registry data have also been linked to administrative records to assess survivorship care. For example, investigators linked state cancer registry data to health insurance claims from Blue Cross/Blue Shield of Virginia to assess adherence to standards of care for women with breast cancer (Hillner et al., 1997). More than three-quarters (79 percent) of women get a follow-up mammogram within the first 18 months postoperatively, according to this study. State cancer registries have also been linked to Medicaid data to examine the experience of Medicaid enrollees diagnosed with cancer (Bradley et al., 2003).

Other survivorship research has relied on hospital cancer registries to identify cohorts of individuals to follow prospectively (Pakilit et al., 2001; Ganz et al., 2002, 2003a). The American Society of Clinical Oncology’s National Initiative on Cancer Care Quality (NICCQ) identified subjects by using the National Cancer Data Base, a national registry of incident cancer cases, and its network of hospital cancer registries.4 Included in the study were a few measures related to the quality of survivorship care (e.g., receipt of tamoxifen for 5 years for certain women with breast cancer, receipt of counseling about the need for first-degree relatives of certain patients with colorectal cancer to undergo screening for this type of cancer) (Schneider et al., 2004).

NCI’s Cancer Research Network (CRN)

Some studies of cancer survivorship, including those based on SEER-Medicare data, exclude members of managed care organizations because such plans often do not have to report encounter data (e.g., individual claims for visits or services) to Medicare. Such plans insure approximately

4  

The National Cancer Data Base (NCDB) is a nationwide, facility-based oncology dataset that captures 75 percent of all newly diagnosed cancer cases in the United States annually. It holds information on more than 15 million cases of reported cancer diagnoses from 1985 to 2002, and continues to grow. The NCDB is supported by the American Cancer Society and the American College of Surgeons Commission on Cancer (Winchester et al., 2004; ACoS, 2004).



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