An Analysis of Cancer Registry Cost Data: Methodology and Results.

The Centers for Disease Control and Prevention initiated an economic analysis of the National Program of Cancer Registries (NPCR) in 2005 to estimate the true economic costs of operating a cancer registry, identify costs associated with registry activities, and evaluate the factors that may affect the efficiency of registry operations. We developed a Web-based NPCR cost assessment tool (NPCR-CAT) to collect activity-based cost data from all 48 NPCR registries. We collected data on registry funding, actual expenditures, and factors that may affect the efficiency of operating a central cancer registry. Key lessons learned during data collection and analysis include the importance of working closely with registry staff and balancing the need for standardized data elements with an understanding of individual registry characteristics. Our findings and lessons can be adapted to develop costing tools for other surveillance systems and cancer control programs, both domestically and internationally.

The history and use of cancer registry data by public health cancer control programs in the United States.

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. Cancer 2017;123:4969-76. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

Population-Based Testing and Treatment Characteristics for Chronic Myelogenous Leukemia.

INTRODUCTION: National and international hematology/oncology practice guidelines recommend testing for the BCR-ABL mutation for definitive diagnosis of chronic myeloid leukemia (CML) to allow for appropriate treatment with a tyrosine kinase inhibitor (TKI). The purpose of our study was to describe population-based testing and treatment practice characteristics for patients diagnosed with CML. METHODS: We analyzed cases of CML using 2011 data from 10 state registries that are part of the Centers for Disease Control and Prevention (CDC)'s National Program of Cancer Registries. We describe completeness of testing for the BCR-ABL gene and availability of outpatient treatment with TKIs and associated characteristics. RESULTS: A total of 685 cases of CML were identified; 55 percent (374) had a documented BCR-ABL gene test with 96 percent (360) of these being positive for the BCR-ABL gene and the remaining 4 percent (14) either testing negative or having a missing result. Registries were able to identify the use of TKIs in 54 percent (369) of patients, though only 43 percent (296) had a corresponding BCR-ABL gene test documented. One state registry reported a significantly lower percentage of patients being tested for the BCR-ABL gene (25 percent) and receiving TKI treatment (21 percent). Limiting analysis to CML case reports from the remaining 9 comparative effectiveness research registries, 78 percent (305) patients had a documented BCR-ABL gene test and 79 percent (308) had documented treatment with a TKI. Receipt of testing or treatment for these 9 states did not vary by sex, race, ethnicity, census tract poverty level, census tract urbanization, or insurance status; BCR-ABL testing varied by state of residence, and BCR-ABL testing and TKI therapy occurred less often with increasing age (BCR-ABL testing: odds ratio [OR], 0.97; 95 percent CI, 0.95-0.99; and TKI therapy: OR, 0.97; 95 percent CI, 0.96-0.99). CONCLUSIONS: Collection of detailed CML data vary significantly by states. A majority of the case patients had appropriate testing for the BCR-ABL gene and treatment with tyrosine kinase inhibitors. However, BCR-ABL testing and TKI treatment decreased with increasing age. Further research is needed to understand CML coding, testing, and treatment disparities.

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

CONTEXT: The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. OBJECTIVES: To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. METHODS: We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. RESULTS: The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. CONCLUSIONS: Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

The cost of cancer registry operations: Impact of volume on cost per case for core and enhanced registry activities.

BACKGROUND: Cancer registration data is vital for creating evidence-based policies and interventions. Quantifying the resources needed for cancer registration activities and identifying potential efficiencies are critically important to ensure sustainability of cancer registry operations. METHODS: Using a previously validated web-based cost assessment tool, we collected activity-based cost data and report findings using 3 years of data from 40 National Program of Cancer Registry grantees. We stratified registries by volume: low-volume included fewer than 10,000 cases, medium-volume included 10,000-50,000 cases, and high-volume included >50,000 cases. RESULTS: Low-volume cancer registries incurred an average of $93.11 to report a case (without in-kind contributions) compared with $27.70 incurred by high-volume registries. Across all registries, the highest cost per case was incurred for data collection and abstraction ($8.33), management ($6.86), and administration ($4.99). Low- and medium-volume registries have higher costs than high-volume registries for all key activities. CONCLUSIONS: Some cost differences by volume can be explained by the large fixed costs required for administering and performing registration activities, but other reasons may include the quality of the data initially submitted to the registries from reporting sources such as hospitals and pathology laboratories. Automation or efficiency improvements in data collection can potentially reduce overall costs.

Use of Adjuvant Chemotherapy among Stage II Colon Cancer Patients in 10 Population-Based National Program of Cancer Registries.

Background: Some guidelines advise adjuvant chemotherapy be considered after surgical resection for high-risk stage II colon cancer patients; however, high-risk criteria are poorly defined and the long-term benefits are still debated. This study documents patterns of care by selected patient and tumor characteristics using a US population-based cohort of stage II colon cancer patients diagnosed in 2011. Methods: Data were collected from 10 specialized cancer registries participating in the Centers for Disease Control and Prevention's National Program of Cancer Registries' Enhancing Cancer Registry Data for Comparative Effectiveness Research project. The data were used to describe characteristics of stage II colon cancer patients treated by surgery to evaluate factors associated with receiving adjuvant chemotherapy. Results: Of the 3,891 stage II colon cancer patients, 14.3% were treated with surgery and adjuvant chemotherapy compared to 82.9% by surgery alone. The patients treated with adjuvant chemotherapy were predominately non-Hispanic white (66.1%), of younger age, and had private insurance (39.9%). Compared to surgery alone, the 5 characteristics associated with adjuvant therapy were younger age (adjusted odds ratio [AOR] for 5-year decrease below 75 years, 1.25; P < .001); more advanced stage (IIB/IIC vs IIA) (AOR, 4.79; P < .001); lymphovascular invasion (AOR, 1.76, P < .001); higher grade (III/IV vs I/II) (AOR, 1.84; P < .001); and registry area. Conclusions: In this population-based cohort, younger patients with more advanced stage II colon tumors, with lymphovascular invasion, and poor differentiation were more likely to receive adjuvant chemotherapy in addition to surgery. These characteristics align with high-risk profiles defined in guidelines. Ongoing data collection on outcomes, including recurrence and survival, will help clarify the benefits of adjuvant treatments for stage II colon patients.