Time from breast cancer diagnosis to treatment among Idaho's National Breast and Cervical Cancer Early Detection Program population, 2011-2017.

PURPOSE: Idaho's Women's Health Check (WHC) Program provides breast and cervical cancer screening to under- and uninsured women via funding from the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). Because WHC serves populations with less access to health care, this study evaluated time from breast cancer diagnosis to treatment for women enrolled in the WHC program and linked to Cancer Data Registry of Idaho (CDRI) case data (WHC-linked) and the remainder of female Idaho resident breast cases. METHODS: Among Idaho residents aged 50-64 years diagnosed during 2011-2017 with ductal carcinoma in situ or invasive breast cancer, we assessed differences in the median time from definitive diagnosis to treatment initiation overall and by demographic and tumor characteristics, and differences in the distribution of demographic and tumor-related variables between 231 WHC-linked and 3,040 non-linked breast cancer cases. RESULTS: WHC-linked cases were significantly less likely to be non-Hispanic white, and more likely to live in poorer census tracts, be diagnosed at a later stage, and be treated with mastectomy. Most WHC-linked (92%) and non-linked women (94%) began treatment within 60 days of diagnosis; no differences in time to treatment were observed. CONCLUSION: Disparities in the interval from definitive diagnosis to breast cancer treatment initiation were not observed for women enrolled in the WHC program relative to other Idaho women.

Impact of Linkage to the Social Security Administration on Follow-up Completeness and Cancer Relative Survival Estimates in 2 New SEER Registries: 2000-2016 Diagnosis Years.

BACKGROUND: The Social Security Administration Service to Epidemiological Researchers (SSA-SER) can help central cancer registries meet the contractual follow-up requirements of the Surveillance, Epidemiology, and End Results (SEER) Program and improve survival estimate accuracy. We evaluated the impact of first-time SSA-SER linkage on follow-up rates and survival estimates for 2 SEER registries. Methods: In May 2019, cancer registries in Idaho (Cancer Data Registry of Idaho [CDRI]) and New York (New York State Cancer Registry [NYSCR]) used results from an SSA-SER linkage to update date of last contact and vital status for patients with a SEER-reportable tumor diagnosed during 2000-2016. We compared follow-up completeness through 2017 between pre-SSA-SER linkage and post-SSA-SER linkage data. Among individuals with a first primary tumor diagnosed during 2009-2015, we calculated 60-month age-standardized all sites and site-specific relative survival ratio (RSR) estimates via the presumed alive method using pre-SSA linkage data, and survival time calculated from last known date of contact using post-SSA linkage data. Results: SSA-SER linkage improved overall followup completeness from 79.0% to 97.4% and 55.7% to 92.6% for CDRI and NYSCR, respectively. Follow-up completeness improved most for laboratory-only reported tumors, in situ tumors, melanomas of the skin, prostate cancers, and benign and borderline brain and other central nervous system tumors. Post-SSA linkage RSRs were lower than pre-SSA presumed alive RSRs by an average -0.47% and -2.16% for Idaho and New York, respectively. Conclusions: SSA-SER linkage greatly and efficiently improved follow-up completeness for the 2 participating registries and revealed small difference in survival estimates by method. Use of the SSA-SER by all US registries would standardize and improve US survival estimates.

Capture and coding of industry and occupation measures: Findings from eight National Program of Cancer Registries states.

BACKGROUND: Although data on industry and occupation (I&O) are important for understanding cancer risks, obtaining standardized data is challenging. This study describes the capture of specific I&O text and the ability of a web-based tool to translate text into standardized codes. METHODS: Data on 62 525 cancers cases received from eight National Program of Cancer Registries (NPCR) states were submitted to a web-based coding tool developed by the National Institute for Occupational Safety and Health for translation into standardized I&O codes. We determined the percentage of sufficiently analyzable codes generated by the tool. RESULTS: Using the web-based coding tool on data obtained from chart abstraction, the NPCR cancer registries achieved between 48% and 75% autocoding, but only 12-57% sufficiently analyzable codes. CONCLUSIONS: The ability to explore associations between work-related exposures and cancer is limited by current capture and coding of I&O data. Increased training of providers and registrars, as well as software enhancements, will improve the utility of I&O data.

Rectal squamous cell carcinoma in immunosuppressed populations: is this a distinct entity from anal cancer?

OBJECTIVE: Squamous cell carcinoma (SCC) of the rectum is rare, but as with anal cancer, risk may be increased among immunosuppressed individuals. We assessed risk of rectal SCC in HIV-infected people. DESIGN: Population-based registry. METHODS: We utilized the HIV/AIDS Cancer Match, a linkage of US HIV and cancer registries (1991-2010), to ascertain cases of anal SCC, rectal SCC, rectal non-SCC, and colon non-SCC. We compared risk in HIV-infected persons with the general population using standardized incidence ratios (SIRs) and evaluated risk factors using Poisson regression. We reviewed cancer registry case notes to confirm site and histology for a subset of cases. RESULTS: HIV-infected persons had an excess risk of rectal SCC compared with the general population (SIR = 28.9; 95% CI 23.2-35.6), similar to the increase for anal SCC (SIR = 37.3). Excess rectal SCC risk was most pronounced among HIV-infected MSM (SIR = 61.2). Risk was not elevated for rectal non-SCC (SIR = 0.88) or colon non-SCC (SIR = 0.63). Individuals diagnosed with AIDS had higher rectal SCC rates than those with HIV-only (incidence rate ratio = 1.92; 95% CI 1.08-3.42). Based on available information, one-third of rectal SCCs were determined to be misclassified anal cancer. CONCLUSION: HIV-infected individuals, especially with advanced immunosuppression, appear to have substantially elevated risk for rectal SCC. As for anal SCC, rectal SCC risk was highest in MSM, pointing to involvement of a sexually transmitted infection such as human papillomavirus. Site misclassification was present, and detailed information on tumour location is needed to prove that rectal SCC is a distinct entity.

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 impact of National Death Index linkages on population-based cancer survival rates in the United States.

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.