BACKGROUND: In order to ensure accurate survival estimates, population-based cancer registries must ascertain all, or nearly all, patients diagnosed with cancer in their catchment area, and obtain complete follow-up information on all deaths that occurred among registered cancer patients. In the US, linkage with state death records may not be sufficient to ascertain all deaths. Since 1979, all state vital statistics offices have reported their death certificate information to the National Death Index (NDI). OBJECTIVE: This study was designed to measure the impact of linkage with the NDI on population-based relative and cancer cause-specific survival rates in the US. METHODS: Central cancer registry records for patients diagnosed 1993-1995 from California, Colorado, and Idaho were linked with death certificate information (deaths 1993-2004) from their individual state vital statistics offices and with the NDI. Two databases were created: one contained incident records with deceased patients linked only to state death records and the second database contained incident records with deceased patients linked to both state death records and the NDI. Survival estimates and 95% confidence intervals from each database were compared by state and primary site category. RESULTS: At 60 months follow-up, 42.1-48.1% of incident records linked with state death records and an additional 0.7-3.4% of records linked with the NDI. Survival point estimates from the analysis without NDI were not contained within the corresponding 95% CIs from the NDI augmented analysis for all sites combined and colorectal, pancreas, lung and bronchus, breast, prostate, non-Hodgkin lymphoma, and Kaposi sarcoma cases in all 3 states using relative survival methods. Additional combinations of state and primary site had significant survival estimate differences, which differed by method (relative versus cause-specific survival). CONCLUSION: To ensure accurate population-based cancer survival rates, linkage with the National Death Index to ascertain out of state and late registered deaths is a necessary process for US central cancer registries.

BACKGROUND: Cancer mortality statistics, an important indicator for monitoring cancer burden, are traditionally restricted to instances when cancer is determined to be the underlying cause of death (UCD) based on information recorded on standard certificates of death. This study's objective was to determine the impact of using multiple causes of death codes to compute site-specific cancer mortality statistics. METHODS: The state cancer registries of California, Colorado and Idaho provided linked cancer registry and death certificate data for individuals who died between 2002 and 2004, had at least one cancer listed on their death certificate and were diagnosed with cancer between 1993 and 2004. These linked data were used to calculate the site-specific proportion of cancers not selected as the UCD (non-UCD) among all cancer-related deaths (any mention on the death certificate). In addition, the retrospective concordance between the death certificate and the population-based cancer registry, measured as confirmations rates, was calculated for deaths with cancer as the UCD, as a non-UCD, and for any mention. RESULTS: Overall, non-UCD deaths comprised 9.5 percent of total deaths; 11 of the 79 cancer sites had proportions greater than 3 standard deviations from 9.5 percent. The confirmation rates for UCD and for any mention did not differ significantly for any of the cancer sites. CONCLUSION AND IMPACT: The site-specific variation in proportions and rates suggests that for a few cancer sites, death rates might be computed for both UCD and any mention of the cancer site on the death certificate. Nevertheless, this study provides evidence that, in general, restricting to UCD deaths will not under report cancer mortality statistics.

Inaccurate coding of patients' Underlying Cause of Death (UCOD) has constrained cause-specific survival estimates for colon and rectal cancers. Using California data from the Accuracy of Cancer Mortality study, we compared the cancer site data from the California Cancer Registry (CCR) with UCODs reported on death certificates and reclassified the UCODs based on cancer registry data when they disagreed. We then calculated 1-, 3-, 5-, and 10-year cause-specific survival for colon and rectal cancers separately, before and after the reclassification. Records from 26 312 colon and 10 687 rectal cancer patients were examined. UCOD records disagreed with CCR records for 700 (6%) of 11 404 colon cancer deaths and with 1958 (39%) of 5011 rectal cancer deaths, and 82% of the misclassified rectal cancer deaths were coded as colon cancer deaths in the UCOD. Reclassification decreased cause-specific survival for both colon and rectal cancers, but the impact was more pronounced for rectal cancer (eg, 5-year cause-specific survival of colon cancer decreased by 2.8% and of rectal cancer decreased by 20.0% relative to previous estimates; absolute rates changed from 65.4% to 63.6%, and 81.2% to 64.9%, respectively, after reclassification). Interchangeable use of the terms colon cancer and colorectal cancer is likely to be one of the reasons for UCOD misclassification. Educational measures could improve the accuracy of UCOD for colon and rectal cancer deaths.

Death certificates are the source for mortality statistics and are used to set public health goals. Accurate death certificates are vital in tracking outcomes of cancer. Deaths may be certified by physicians or other medical professionals, coroners, or medical examiners. Idaho is one of 3 states that participated in a Centers for Disease Control and Prevention-funded study to assess the concordance between cancer-specific causes of death and primary cancer site among linked cancer registry/death certificate data. We investigated variability in the accuracy of cancer death certificates by characteristics of death certifiers, including certifier type (physician vs coroner), physician specialty, years of experience as death certifier, and number of deaths certified. This study showed significant differences by certifier type/physician specialty in the accuracy of cancer mortality measured by death certificates. Nonphysician coroners had lower accuracy rates compared with physicians. Although nonphysician coroners certified less than 5% of cancer deaths in Idaho, they were significantly less likely to match the primary site from the cancer registry. Results from this study may be useful in the future training of death certifiers to improve the accuracy of death certificates and cancer mortality statistics.

PROBLEM/CONDITION: Population-based screening is conducted to detect diseases or other conditions in persons before symptoms appear; effective screening leads to early detection and treatment, thereby reducing disease-associated morbidity and mortality. Based on systematic reviews of the evidence of the benefits and harms and assessments of the net benefit of screening, the U.S. Preventive Services Task Force (USPSTF) recommends population-based screening for colon and rectum cancer, female breast cancer, and uterine cervix cancer. Few publications have used national data to examine the stage at diagnosis of these screening-amenable cancers. REPORTING PERIOD COVERED: 2004-2006. DESCRIPTION OF SYSTEMS: Data were obtained from cancer registries affiliated with CDC's National Program of Cancer Registries (NPCR) and the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) program. Combined data from the NPCR and SEER programs provide the best source of information on national population-based cancer incidence. Data on cancer screening were obtained from the Behavioral Risk Factor Surveillance System. This report provides stage-specific cancer incidence rates and screening prevalence by demographic characteristics and U.S. state. RESULTS: Approximately half of colorectal and cervical cancer cases and one third of breast cancer cases were diagnosed at a late stage of disease. Incidence rates of late-stage cancer differed by age, race/ethnicity, and state. Incidence rates of late-stage colorectal cancer increased with age and were highest among black men and women. Incidence rates of late-stage breast cancer were highest among women aged 60-79 years and black women. Incidence rates of late-stage cervical cancer were highest among women aged 50-79 years and Hispanic women. The percentage of persons who received recommended screening differed by age, race/ethnicity, and state. INTERPRETATION: Differences in late-stage cancer incidence rates might be explained partially by differences in screening use. PUBLIC HEALTH ACTION: The findings in this report emphasize the need for ongoing population-based surveillance and reporting to monitor late-stage cancer incidence trends. Screening can identify colorectal, cervical, and breast cancers in earlier and more treatable stages of disease. Multiple factors, including individual characteristics and health behaviors as well as provider and clinical systems factors, might account for why certain populations are underscreened. Cancer control planners, including comprehensive cancer-control programs, can use late-stage cancer incidence and screening prevalence data to identify populations that would benefit from interventions to increase screening utilization and to monitor performance of early detection programs.

BACKGROUND: One measure of the accuracy of cancer mortality statistics is the concordance between cancer defined as the underlying cause of death from death certificates and cancer diagnoses recorded in central, population-based cancer registries. Previous studies of such concordance are outdated. OBJECTIVE: To characterize the accuracy of cancer mortality statistics from the concordance between cancer cause of death and primary cancer site at diagnosis. DESIGN: Central cancer registry records from California, Colorado, and Idaho in the U.S. were linked with state vital statistics data and evaluated by demographic and tumor information across 79 site categories. A retrospective arm (confirmation rate per 100 deaths) compared death certificate data from 2002 to 2004 with cancer registry diagnoses from 1993 to 2004, while a prospective arm (detection rate per 100 deaths) compared cancer registry diagnoses from 1993 to 1995 with death certificate data from 1993 to 2004 by International Statistical Classification of Diseases and Related Health Problems (ICD) version used to code deaths. RESULTS: With n=265,863 deaths where cancer was recorded as the underlying cause based on the death certificate, the overall confirmation rate for ICD-10 was 82.8% (95% confidence interval [CI], 82.6-83.0%), the overall detection rate for ICD-10 was 81.0% (95% CI, 80.4-81.6%), and the overall detection rate for ICD-9 was 85.0% (95% CI, 84.8-85.2%). These rates varied across primary sites, where some rates were <50%, some were 95% or greater, and notable differences between confirmation and detection rates were observed. CONCLUSIONS: Important unique information on the quality of cancer mortality data obtained from death certificates is provided. In addition, information is provided for future studies of the concordance of primary cancer site between population-based cancer registry data and data from death certificates, particularly underlying causes of death coded in ICD-10.

Compelling public interest is propelling national efforts to advance the evidence base for cancer treatment and control measures and to transform the way in which evidence is aggregated and applied. Substantial investments in health information technology, comparative effectiveness research, health care quality and value, and personalized medicine support these efforts and have resulted in considerable progress to date. An emerging initiative, and one that integrates these converging approaches to improving health care, is "rapid-learning health care." In this framework, routinely collected real-time clinical data drive the process of scientific discovery, which becomes a natural outgrowth of patient care. To better understand the state of the rapid-learning health care model and its potential implications for oncology, the National Cancer Policy Forum of the Institute of Medicine held a workshop entitled "A Foundation for Evidence-Driven Practice: A Rapid-Learning System for Cancer Care" in October 2009. Participants examined the elements of a rapid-learning system for cancer, including registries and databases, emerging information technology, patient-centered and -driven clinical decision support, patient engagement, culture change, clinical practice guidelines, point-of-care needs in clinical oncology, and federal policy issues and implications. This Special Article reviews the activities of the workshop and sets the stage to move from vision to action.