The National Cancer Data Base (NCDB) of the American College of Surgeons (ACS), the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI), and the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC) are among the leading registries for cancer surveillance, collecting cancer epidemiology data for the majority of the U.S. population. 1 This national coverage aids researchers and policymakers in conducting epidemiologic studies and allocating health resources. 1,2
U.S. federal law mandates the reporting of cancer. 3,4 State laws require cancer reporting as well, but requirements vary slightly from state to state. 5 However, all cancers with an ICD-O (International Classification of Diseases for Oncology) code of 2 or 3 are reportable. For Washington state, cancer must be reported unless it is basal or squamous cell carcinoma of nonmucoepidermoid skin or in situ cancer of the uterine cervix. 5 In general, each facility that diagnoses or treats a melanoma is required to report it. Data are consolidated at the central registry level if necessary.
Cancer reporting often fails to meet states’ requirements. 6-8 Since the inception of SEER and NPCR, many studies have assessed the accuracy of the cancer data reported to these registries and have found these data to be inaccurate or incomplete. 6-8 Melanoma reporting, in particular,
seems to be prone to error. Studies have demonstrated melanoma underreporting ranging from 10% to 70%, with an increase in underreporting over time. 9-11 Significant delays of up to 10 years have been found between initial diagnosis and reporting for melanomas. 12 In general, these studies have focused on smaller facilities, such as private laboratories, which lack in-house reporting systems.
Cancer reporting is especially important in the VHA, the largest U.S. health care system. Health data on about 9 million enrolled veterans have been invaluable for understanding cancer epidemiology. Underreporting and misreporting of cancer cases in private medical offices and smaller treatment facilities may be attributable to lack of funding, personnel, administrative support, or knowledge of reporting requirements. In contrast, the VHA requires cancer reporting and provides funding, personnel, and administrative support. 13
The VA Puget Sound Health Care System (VAPSHCS) traditionally has employed registrars to perform the majority of basic cancer registry tasks, including abstracting, case finding, and lifelong follow-up of the cancer patients listed in the registry. The registrars use OncoTraX software, which finds possible cancer cases from pathology, radiology, and patient treatment files, to accession cases. Unique cancer cases are reported to the VA Central Cancer Registry (VACCR), the Washington state registry, and the NCDB, which then transfer the data to the national registries. Accordingly, cases not accessioned would not be reported to the VA, state, and national registries.
The authors conducted a quality improvement project to ascertain whether primary cutaneous melanomas biopsied at VAPSHCS were underreported.
The VAPSHCS serves about 100,000 veterans and consists of 2 major treatment facilities, 2 community-based outpatient clinics, 1 outreach clinic, and 4 contract community-based outpatient clinics. Pathology cases for the entire VAPSHCS are accessioned in a central laboratory in Seattle.