Capture of tobacco use among population-based registries: Findings from 10 National Program of Cancer Registries states.

BACKGROUND: Tobacco use data are important when the epidemiology and prognosis of tobacco-associated cancers are being defined. Central cancer registries in 10 National Program of Cancer Registries states pilot-tested the collection of standardized tobacco use variables. This study evaluated the capture of tobacco use data and examined smoking prevalence among cancer patients. METHODS: Participating registries collected data about the use of tobacco-cigarettes, other smoked tobacco, and smokeless tobacco-for cases diagnosed during 2011-2013. The percentage of cases with known tobacco variable values was calculated, and the prevalence of tobacco use was analyzed by the primary cancer site and state. RESULTS: Among 1,646,505 incident cancer cases, 51% had known cigarette use data: 18% were current users, 31% were former users, and 51% reported never using. The percentage of cases with a known status for both other smoked tobacco and smokeless tobacco was 43%, with 97% and 98% coded as never users, respectively. The percent known for cigarette use ranged from 27% to 81% by state and improved from 47% in 2011 to 59% in 2013 for all 10 states combined. The percent known for cigarette use and the prevalence of ever smoking cigarettes were highest for laryngeal cancer and tracheal, lung, and bronchus cancer. CONCLUSIONS: Cancer registrars ascertained cigarette use for slightly more than half of all new cancer cases, but other tobacco-related fields were less complete. Studies to evaluate the validity of specific tobacco-related variables and the ability of cancer registries to capture this information from the medical record are needed to gauge the usefulness of collecting these variables through cancer surveillance systems. Cancer 2018;124:2381-9. © 2018 American Cancer Society.

Rationale and Methodologic Approach for Assessing Ovarian Cancer Treatment and Gynecologic Oncologist Involvement in the Midwest Region of the United States.

Introduction: A study was conducted to examine treatment patterns and outcomes among women with a primary ovarian cancer diagnosis in the Midwest region of the United States, an area that has relatively fewer gynecologic oncologists (GOs) and diverse geography with respect to urban and rural areas. In this paper, we examine the methodology of working with central cancer registries (CCRs) to collect additional data items, including those related to GO involvement and detailed treatment. Methods: Westat recruited 3 state CCRs from the Midwest to participate in the study. Cases were randomly selected from 2010-2012 ovarian, fallopian tube, or primary peritoneal cancer diagnoses in participating registry databases that met the selection criteria. CCRs abstracted additional information for selected cases, including study-specific data items regarding surgery and chemotherapy, GO involvement, and recurrence, where applicable. Results: Abstracts with study-specific data items were collected among a total of 1,003 incidence ovarian cancer cases, with 432 additional abstracts for those cases identified as having recurrence. Variables with the highest frequency of unknowns were mostly for patients who had chemotherapy. While data were available for whether the patient received chemotherapy, the specifics about that chemotherapy were not always available, with dosing and unit being unknown in 27% of cases. There were several challenges with initiating and completing this study associated with recruitment, the data collection timeline, and the collection of study-specific data items. Conclusion: This paper outlines the methodologic approach and experience of collecting additional surgical and chemotherapy treatment variables and data on GO involvement in care from medical records. Experiences from this study provide critical lessons that can be applied to future data collection in this area. Ultimately, the accurate collection of these elements enables researchers to identify groups of women who are not receiving the benefit of optimal surgery or GO care and provides critical data on interventions for improved outcomes and survival in ovarian cancer patients.

Surgical staging of early stage epithelial ovarian cancer: results from the CDC-NPCR ovarian patterns of care study.

OBJECTIVES: The objectives of this study were to determine the adequacy of surgical staging performed on surgically treated epithelial ovarian cancer (EOC) patients with apparent early stage disease and to determine if receipt of surgical staging had an influence on survival. METHODS: Detailed surgical staging information was collected from medical records for 721 patients diagnosed between 1998 and 2000 with EOC. Patients resided in California or New York and were identified through population-based cancer registries. RESULTS: Nearly 90% of patients had removal of the omentum and evaluation of bowel serosa and mesentery but only 72% had assessment of retroperitoneal lymph nodes and the majority of patients did not receive biopsies of other peritoneal locations. Only lymph node assessment (as well as node assessment combined with washings and omentectomy) had a statistically significant association with improved survival. The 5-year survival for women with node sampling was 84.2% versus 69.6% for those without this surgical procedure, and patients who did not have lymph node assessment had nearly twice the risk of death as those who did. When patients were stratified by receipt of chemotherapy, lack of node sampling had an effect only on patients who also had no chemotherapy (adjusted HR=2.2, CI=1.0-4.5). CONCLUSIONS: The results of this population-based study confirm the prognostic importance of surgical staging for women with EOC, and the important role of gynecologic oncologists in treating these patients. Adjuvant chemotherapy does not appear to further improve survival for those women who receive adequate surgical staging.

The incidence of primary fallopian tube cancer in the United States.

OBJECTIVE: The objective of this study was to report the incidence of primary fallopian tube carcinoma (PFTC) in the United States population and to describe associated demographic and clinical factors. METHODS: A total of 3051 PFTC cases diagnosed from 1998 to 2003, reported from population-based cancer registries, were analyzed. Registries contributing data represent 83.1% of the U.S. population. Data are presented by age, race/ethnicity, U.S. census region, stage, histology, grade, and laterality. Trends in incidence over time from 1998 to 2003 are also presented. RESULTS: The incidence rate was 0.41 per 100,000 women from 1998 to 2003. White, non-Hispanic women and women aged 60-79 had the highest incidence rates (p<0.0001). The majority (88%) of PFTCs were adenocarcinomas; serous adenocarcinomas accounted for 44% and endometrioid adenocarcinomas for 19% of adenocarcinoma diagnoses. Essentially half (49.9%) of PFTCs were poorly differentiated; 89% were unilateral at diagnosis. Stage at diagnosis was fairly evenly distributed among localized (36%), regional (30%), and distant (32%). Overall, rates of PFTC remained stable over time. Among women aged 65-69, incidence rates increased significantly by 3.8% per year from 1998 to 2003 (p<0.05). CONCLUSIONS: This report provides characteristics of PFTC using the largest number of cases assembled in one study to date. Although the demographic characteristics of PFTC are similar to those of ovarian cancer, stage at diagnosis and the stable trend observed in PFTC are in contrast to ovarian cancer. Future studies should focus on examining the increasing trend of PFTC among 65- to 69-year-old women.

Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control.

The implications of age and comorbidity on survival following epithelial ovarian cancer: summary and results from a Centers for Disease Control and Prevention study.

BACKGROUND: Advances in treatment have improved ovarian cancer survival for most women, although less for the elderly. We report on this disparity and add further evidence about the relationship among age, comorbidity, and survival after ovarian cancer. METHODS: To examine age and comorbidity, Centers for Disease Control and Prevention (CDC)-funded cancer registries examined 2367 women residing in New York and Northern California diagnosed with epithelial ovarian cancer (1998-2000). Subjects were identified through tumor registries, treatment data were supplemented with physician survey, and comorbidity was identified through hospital discharge database linkages. Proportional hazards modeling was used to estimate the risk of death by age and comorbidity, adjusting for clinical and sociodemographic factors. RESULTS: Crude survival at 1 year and 3 years was 71.9% and 50.1%, respectively. Within stage, age-specific survival rates were lower in the oldest groups, particularly for those with advanced disease. For age 75+, 3-year survival was 13% vs. 50% in those <35 (stage IV). For all stages, women without comorbidity had higher survival rates than those with comorbidity. Older age and comorbidity were both associated with advanced stage and less aggressive treatment. The adjusted risk of death was 40%, and it was 80% higher for the 65-74 and 75+ groups, respectively, compared to women 35-64 (p<0.00). Comorbidity increased the risk of death by 40% (p<0.00). CONCLUSIONS: This study confirmed the independent adverse effects of age and comorbidity on survival following ovarian cancer. As the population ages, the co-occurrence of ovarian cancer and comorbidity will increase. Further work identifying critical conditions that impact survival could potentially inform complex treatment decisions.

Quality of cancer registry data: findings from CDC-NPCR's Breast and Prostate Cancer Data Quality and Patterns of Care Study.

BACKGROUND: The Breast and Prostate Cancer Data Quality and Patterns of Care (POC-BP) Study enabled a reabstraction study of the quality of population-based, central cancer registry data on the characteristics and initial treatment of breast cancer in females and prostate cancer in the United States. METHODS: Stratified random samples of 9,103 female breast cancers and 8,995 prostate cancers were available for the analysis, using the independently reabstracted data as the gold standard to compute measurements of agreement. RESULTS: A slight majority (53% [8/15]) of the cancer site and treatment combinations showed kappa statistics > or = 0.60 and percent agreements, sensitivities, and predictive values positive > or = 80%: surgery and radiation for the 2 cancers, radiation completed and chemotherapy for breast cancer, and radiation modality and hormone therapy for prostate cancer. The qualities of the Collaborative Stage (CS) site-specific factors and derived variables for the 2 cancers were inconsistent, which confirmed the need to evaluate the recently-implemented CS algorithm. CONCLUSION: The data quality analysis from POC-BP underscores the importance of examining the quality of specific data variables by cancer site, thereby highlighting those variables for which data collection procedures could be improved.

A population-based study of colorectal cancer histology in the United States, 1998-2001.

BACKGROUND: Histology is an important factor in the etiology, treatment, and prognosis of cancer. The purpose of this study was to descriptively characterize colorectal cancer (CRC) histology in the United States population. METHODS: Data from cancer registries in the National Program of Cancer Registries (NPCR) or Surveillance, Epidemiology and End Results (SEER) program, representing 88% of the U.S. population, were used in the study. The analysis included 522,630 microscopically confirmed CRC cases diagnosed from 1998-2001. RESULTS: About 96% of CRCs were adenocarcinomas, approximately 2% were other specified carcinomas (including carcinoid tumors), about 0.4% were epidermoid carcinomas, and about 0.08% were sarcomas. The proportion of epidermoid carcinomas, mucin-producing carcinomas, and carcinoid tumors was greater among females. Several histologic patterns with regard to race and ethnicity existed, including a higher percentage of carcinoid tumors among most non-white populations. With respect to age, higher percentages of sarcomas, mucin-producing adenocarcinomas, signet ring cell tumors, and carcinoid tumors were found in individuals under age 40. Overall, adenocarcinomas were more likely to be diagnosed at regional stages with moderate differentiation. Compared with other adenocarcinomas, signet ring cell tumors were more often poorly differentiated and were at distant stage at diagnosis. Carcinoid tumors and sarcomas were mainly poorly differentiated and were at localized stage at diagnosis. Small cell carcinomas were more likely undifferentiated and were at distant stage at diagnosis. CONCLUSIONS: To date, this is the largest population-based study to analyze CRC histology in the United States. Distinct demographic and clinical patterns associated with different histologies may be helpful for future epidemiologic, laboratory, and clinical studies.