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.

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.

Cancer among Refugees Resettled to Idaho during 2008-2019: A Proof-of-Concept Study.

BACKGROUND: Disparities in cancer burden and outcomes according to socioeconomic characteristics have been extensively characterized for US populations. The cancer experience of refugees, who may share characteristics of other socioeconomically disadvantaged populations and also experience distinct barriers to care, has not been described previously. We conducted a proof-of-concept study evaluating our ability to characterize cancer incidence in refugees resettled to Idaho via a novel linkage of cancer data and administrative data characterizing refugee arrivals to Idaho. METHODS: In July 2021, the Cancer Data Registry of Idaho probabilistically linked cancer surveillance data and refugee arrival data (2008- 2019 diagnosis and arrival years) collected through the Centers for Disease Control and Prevention's Electronic Disease Notification (EDN) System. We used SEER*Stat to calculate standardized incidence ratios (SIR) for malignant tumors and benign/borderline malignant brain and other nervous system (ONS) tumors using Idaho-specific and Surveillance, Epidemiology, and End Results (SEER) Program referent incidence rates. RESULTS: 60 malignant and 7 benign brain and ONS tumors were diagnosed among 9,499 refugees resettled to Idaho. Refugees had fewer than expected malignant tumors overall (57 observed vs 96.0 expected; SIR, 0.60; 95% CI, 0.45-0.77). An excess of tumors of the esophagus were diagnosed among Southeast Asian refugees (4 observed vs 0.64 expected; SIR, 6.3; 95% CI, 1.7-16.0). We also used EDN data to update country of birth for linked persons. CONCLUSIONS: Linking EDN refugee data to cancer surveillance data presented unique challenges. However, we used a novel data source to augment cancer data and characterize incidence in refugees, potentially improving our ability to serve this vulnerable population.

A novel approach to increase awareness about hereditary colon cancer using a state cancer registry.

PURPOSE: The aim of this project was to conduct educational outreach about hereditary colon cancer to a targeted high risk population identified through a state cancer registry. METHODS: Individuals who met one of the first three Bethesda criteria guidelines were identified through the Colorado Central Cancer Registry. The physician of record received a brochure, survey and form to provide written consent to contact patient(s). Cases were mailed an educational brochure, initial and follow-up survey. RESULTS: Five hundred seventy-five cases and 412 physicians were identified; 81% provided consent. Ninety percent of physicians felt the registry should provide this information to at-risk patients. Twenty-three percent of the cases returned the survey. Cases were generally glad to get the information. Only four cases reported concern. The majority agreed the cancer registry should send the information, however most preferred their physicians be consented first. At follow-up, 20 cases reported having or intending to have a risk assessment. CONCLUSIONS: Response from physicians and cases was positive, suggesting that targeted outreach using cancer registries, in combination with physician notification, may be a viable approach to educational outreach about cancer genetics. A proportion of cases sought risk assessment, suggesting that mail-based outreach may be effective in increasing uptake of information and/or genetic services.

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.

Breast and colorectal cancer recurrence and progression captured by five U.S. population-based registries: Findings from National Program of Cancer Registries patient-centered outcome research.

OBJECTIVES: Cancer recurrence is a meaningful patient outcome that is not captured in population-based cancer surveillance. This project supported National Program of Cancer Registries central cancer registries in five U.S. states to determine the disease course of all breast and colorectal cancer cases. The aims were to assess the feasibility of capturing disease-free (DF) status and subsequent cancer outcomes and to explore analytic approaches for future studies. METHODS: Data were obtained on 11,769 breast and 6033 colorectal cancer cancers diagnosed in 2011. Registry-trained abstractors reviewed medical records from multiple sources for up to 60 months to determine documented DF status, recurrence, progression and residual disease. We described the occurrence of these patient-centered outcomes along with analytic considerations when determining time-to-event outcomes and recurrence-free survival. RESULTS: Disease-free status was determined on all but 3.8 % of cancer cases. Among 14,458 cases that became DF, 6.1 % of breast and 13.0 % of colorectal cancer cases had a documented recurrence. Recurrence-free survival varied by stage; for stage II-III cancers at 48 months, 83.2 % of female breast and 69.2 % of colorectal cancer patients were alive without recurrence. The ability to distinguish between progression and residual disease among never disease-free patients limited our ability to examine progression as an outcome. CONCLUSIONS: This study demonstrated that population-based registries given intense support and resources can capture recurrence and offer a generalizable picture of cancer outcomes. Further work on refining definitions, sampling strategies, and novel approaches to capture recurrence could advance the ability of a national cancer surveillance system to contribute to patient-centered outcomes research.

Promoting guideline-based cancer genetic risk assessment for hereditary breast and ovarian cancer in ethnically and geographically diverse cancer survivors: Rationale and design of a 3-arm randomized controlled trial.

BACKGROUND: Although national guidelines for cancer genetic risk assessment (CGRA) for hereditary breast and ovarian cancer (HBOC) have been available for over two decades, less than half of high-risk women have accessed these services, especially underserved minority and rural populations. Identification of high-risk individuals is crucial for cancer survivors and their families to benefit from biomedical advances in cancer prevention, early detection, and treatment. METHODS: This paper describes community-engaged formative research and the protocol of the ongoing randomized 3-arm controlled Genetic Risk Assessment for Cancer Education and Empowerment (GRACE) trial. Ethnically and geographically diverse breast and ovarian cancer survivors at increased risk for hereditary cancer predisposition who have not had a CGRA are recruited through the three statewide cancer registries. The specific aims are to: 1) compare the effectiveness of a targeted intervention (TP) vs. a tailored counseling and navigation(TCN) intervention vs. usual care (UC) on CGRA utilization at 6 months post-diagnosis (primary outcome); compare the effectiveness of the interventions on genetic counseling uptake at 12 months after removal of cost barriers (secondary outcome); 2) examine potential underlying theoretical mediating and moderating mechanisms; and 3) conduct a cost evaluation to guide dissemination strategies. DISCUSSION: The ongoing GRACE trial addresses an important translational gap by developing and implementing evidence-based strategies to promote guideline-based care and reduce disparities in CGRA utilization among ethnically and geographically diverse women. If effective, these interventions have the potential to reach a large number of high-risk families and reduce disparities through broad dissemination. TRIAL REGISTRATION NUMBER: NCT03326713; clinicaltrials.gov.

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.

Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care.

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.

Adjuvant Chemotherapy for Patients with Stage III Colon Cancer: Results from a CDC-NPCR Patterns of Care Study.

OBJECTIVE: To evaluate adjuvant chemotherapy use for Stage III colon cancer. METHODS: This analysis included 973 patients with surgically treated stage III colon cancer. Socioeconomic information from the 2000 census was linked to patients' residential census tracts. Vital status through 12/31/02 was obtained from medical records and linkage to state vital statistics files and the National Death Index. RESULTS: Adjuvant chemotherapy was received by 67%. Treatment varied by state of residence, with Colorado, Rhode Island and New York residents more likely to receive chemotherapy than Louisiana residents. Older age, increasing comorbidities, divorced/widowed marital status, and residence in lower education areas or non-working class neighborhoods were associated with lower chemotherapy use. Survival varied by state but after adjustment for sex, sociodemographic and health factors, was significantly higher only for California and Rhode Island. Older age and lower educational attainment were associated with lower survival. Chemotherapy was protective for all comorbidity groups. CONCLUSION: Although adjuvant chemotherapy for Stage III colon cancer improves survival, some patients did not receive standard of care, demonstrating the need for cancer treatment surveillance. Interstate differences likely resulted from differences in local practice patterns, acceptance of treatment, and access.