Cancer Registry Enrichment via Linkage with Hospital-Based Electronic Medical Records: A Pilot Investigation.

Background: Hospital electronic medical record (EMR) systems are becoming increasingly integrated for management of patient data, especially given recent policy changes issued by the Centers for Medicaid and Medicare Services. In addition to data management, these data provide evidence for patient-centered outcomes research for a range of diseases, including cancer. Integrating EMR patient data with existing disease registries strengthens all essential components for assuring optimal health outcomes. Objectives: To identify the mechanisms for extracting, linking, and processing hospital EMR data with the Florida Cancer Data System (FCDS); and to assess the completeness of existing registry treatment data as well as the potential for data enhancement. Methods: A partnership among the Florida Department of Health, FCDS, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. Records for admission years between 2007 and 2010 were extracted using ICD-9-CM codes as the trigger and were linked with the cancer registry for patients with invasive cancers of the breast. Results: A total of 11,506 unique patients were linked with a total of 12,804 unique breast tumors. Evaluation of existing registry treatment data against the hospital EMR produced a total of 5% of registry records with updated surgery information, 1% of records with updated radiation information, and 7% of records updated with chemotherapy information. Enhancement of registry treatment information was particularly affected by the availability of chemotherapy medications data. Conclusion: Hospital EMR linkages to cancer disease registries is feasible but challenged by lack of standards for data collection, coding and transmission, comprehensive description of available data, and the exclusion of certain hospital datasets. The FCDS standard treatment data variables are highly robust and complete but can be enhanced by the addition of detailed chemotherapy regimens that are commonly used in patient centered outcomes research.

Cancer registration data and quality indicators in low and middle income countries: their interpretation and potential use for the improvement of cancer care.

Cancer registration data plays a major role in the design and monitoring of cancer control activities and policies, and population-based cancer registries (PBCR) are the main source of information. In developed countries, the healthcare infrastructure enables the registration of quality cancer data. In low and middle Income countries (LMIC), where health care facilities are limited or scarce, cancer registration data may be of low quality. The aim of this article is to demonstrate the value of cancer incidence data for LMIC, even when quality is questionable, as well as to attempt to interpret the messages that the quality indicators convey both for cancer registration and the healthcare system. The study of data submitted to the Cancer incidence in five continents, volume nine (CI5-IX) leads to the conclusion that when PBCR from LMIC cannot provide good quality data it may indicate a deficiency that goes above and beyond the registrar ability. The quality control indicators evaluated provide insight on local conditions for cancer diagnosis and care. Low data quality not only signals lack of collaboration among reporting sources and the inability of the registrar to perform quality abstracting, but also points to specific weaknesses of the cancer care system and can guide improvement goals and efforts.

Detecting an association between socioeconomic status and late stage breast cancer using spatial analysis and area-based measures.

OBJECTIVES: To assess the relationship between socioeconomic status (SES) and late stage breast cancer using the cluster detection software SaTScan and U.S. census-derived area-based socioeconomic measures. MATERIALS AND METHODS: Florida's 18,683 women diagnosed with late stage breast cancer (regional or distant stage) between 1998 and 2002 as identified by Florida's population-based, statewide, incidence registry were analyzed by SaTScan to identify areas of higher-than-expected incidence. The relationship between SES and late stage breast cancer was assessed at the neighborhood (block group) level by combining the SaTScan results with area-based SES data. RESULTS: SaTScan identified 767 of Florida's 9,112 block groups that had higher-than-expected incidence of late stage breast cancer. After controlling for patient level insurance status, county level mammography prevalence, and urban/rural residence in the logistic regression model, women living in neighborhoods of severe and near poverty were respectively 3.0 and 1.6 times more likely to live in areas of higher-than-expected incidence of late stage breast cancer when compared with women living in nonpoverty. Additionally, areas in the lowest quartile of mammography usage were almost seven times more likely to have higher-than-expected incidence than areas in the higher quartiles. CONCLUSIONS: In addition to confirming the importance of mammography, results from the present study suggest that "where" you live plays an important role in defining the risk of presenting with late stage breast cancer. Additional research is urgently needed to understand this risk and to leverage the strengths and resources present in all communities to lower the late stage breast cancer burden.

Cancer registry enrichment via linkage with hospital-based electronic medical records: a pilot investigation.

BACKGROUND: Hospital electronic medical record (EMR) systems are becoming increasingly integrated for management of patient data, especially given recent policy changes issued by the Centers for Medicaid and Medicare Services. In addition to data management, these data provide evidence for patient-centered outcomes research for a range of diseases, including cancer. Integrating EMR patient data with existing disease registries strengthens all essential components for assuring optimal health outcomes. OBJECTIVES: To identify the mechanisms for extracting, linking, and processing hospital EMR data with the Florida Cancer Data System (FCDS); and to assess the completeness of existing registry treatment data as well as the potential for data enhancement. METHODS: A partnership among the Florida Department of Health, FCDS, and a large Florida hospital system was established to develop methods for hospital EMR extraction and transmission. Records for admission years between 2007 and 2010 were extracted using ICD-9-CM codes as the trigger and were linked with the cancer registry for patients with invasive cancers of the breast. RESULTS: A total of 11,506 unique patients were linked with a total of 12,804 unique breast tumors. Evaluation of existing registry treatment data against the hospital EMR produced a total of 5 percent of registry records with updated surgery information, 1 percent of records with updated radiation information, and 7 percent of records updated with chemotherapy information. Enhancement of registry treatment information was particularly affected by the availability of chemotherapy medications data. CONCLUSION: Hospital EMR linkages to cancer disease registries is feasible but challenged by lack of standards for data collection, coding and transmission, comprehensive description of available data, and the exclusion of certain hospital datasets. The FCDS standard treatment data variables are highly robust and complete but can be enhanced by the addition of detailed chemotherapy regimens that are commonly used in patient centered outcomes research.

Oral cavity cancer in developed and in developing countries: population-based incidence.

BACKGROUND: The incidence of oral cavity cancer (OCC) is not well documented because it is rarely described in accord with the anatomic definition but is usually grouped with oropharyngeal subsites. We studied the incidence of OCC in developed and in developing countries. METHODS: The age-standardized and age-specific incidence rates of OCC were calculated for the period 1998-2002, using the topographic definition used by the Union Internationale Contre le Cancer (UICC), based on data from CI5-IX. RESULTS: The highest rates are observed in Pakistan, Brazil, India, and France and were consistent with country-specific risk factors and their prevalence. CONCLUSIONS: In developing countries, people are exposed to a wider range of risk factors, starting at younger ages, and primary prevention measures and policies are needed. Awareness of professionals must be improved to identify people at risk and target them for prevention and to minimize the consequences of OCC.

Primary oral melanoma: population-based incidence.

Primary oral melanoma (POM) is a rare form of melanoma, generally diagnosed at a late stage and has poor prognosis. Epidemiological information has scarcely been reported in the literature over the past 40 years. Analyzing the Cancer Incidence in Five Continents volume IX (CI5-IX) database we found a total of 124,436 oral cavity cancers reported from all population-based cancer registries and 319 cases of POM reported by 67 cancer registries. To our knowledge this is the largest number of POM cases analyzed and accounts for 0.26% of all oral cavity cancers. ASR(W) for POM do not exceed 0.01 per 100,000 persons-year in all regions. The most common anatomic sites were palate (47%) and gum (27.6%) and a detailed oral mucosa examination and biopsies of nodular or macular lesions in these sites, especially on elderly patients, is advised to be routinely performed.

Cervical cancer screening policies and coverage in Europe.

The aim of the study was to compare current policy, organisation and coverage of cervical cancer screening programmes in the European Union (EU) member states with European and other international recommendations. According to the questionnaire-based survey, there are large variations in cervical cancer screening policies and inadequacies in the key organisational elements of the programme such as registration and monitoring required for quality-assurance and fail-safe mechanisms. Based on data from available screening registers, coverage of the screening test taken within the population-based programme was below 80% in all programmes, ranging from 10% to 79%. The screening capacity is satisfactory in most EU member states, however, and there is even over-capacity in several countries. There are also countries which do not have an acceptable capacity yet. Control of proper capacity along with education, training and communication among women, medical professionals and authorities are required, accordingly. The study indicates that, despite substantial efforts, the recommendations of the Council of the EU on organised population-based screening for cervical cancer are not yet fulfilled. Decision-makers and health service providers should consider stronger measures or incentives in order to improve cervical cancer control in Europe.

Gender- and race-specific comparison of tobacco-associated cancer incidence trends in Florida with SEER regional cancer incidence data.

OBJECTIVE: Analysis of state and national tobacco-associated cancer trends is critical for the identification of high-risk regions of the country that require the attention of the public health community. This study compares Florida race- and gender-specific cancer trends with pooled data obtained from nine Surveillance, Epidemiology, and End Results (SEER-9) registries. METHODS: Age-adjusted, race- and gender-specific cancer incidence trends were evaluated using joinpoint regression analysis. Pooled, age-adjusted incidence rates and standardized incidence rate ratios were computed for each cancer for the years 1999-2003 to compare Florida to SEER-9. RESULTS: Relative to SEER-9 whites and irrespective of gender, lung cancer rates in white Floridians were elevated through the 1990s. However, lung cancer rates have recently declined at a steeper rate among white Floridians than among SEER-9 whites. For years 1999-2003, black Floridians had significantly lower rates of lung, bladder, pancreas, and kidney cancer relative to SEER-9 blacks. The opposite pattern was evident for white Floridians with significantly higher rates of lung and laryngeal cancer relative to SEER-9 whites. CONCLUSION: Progress in the reduction of tobacco-associated cancers among white Floridians lags behind the progress noted in SEER-9 registries suggesting that additional state-directed smoking prevention and smoking cessation measures are needed.

The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida.

OBJECTIVES: Assess the effect of race/ethnicity and insurance coverage on the receipt of standard treatment for local breast cancer. METHODS: Local breast cancers diagnosed between July 1997 and December 2000 and reported to Florida's registry were linked to the Agency of Healthcare Administration inpatient and outpatient databases, resulting in 23,817 female local breast cancers with informative treatment. Standard treatment was defined as mastectomy or breast-conserving surgery followed by radiation therapy and it was modeled as a function of health insurance and race/ethnicity accounting for age at diagnosis, marital status and facility type. RESULTS: Approximately 88% of the local breast cancers received standard treatment. The likelihood of standard treatment decreased by 3% per year of increase in the age at diagnosis. Compared to white non-Hispanic, black non-Hispanic women were 19% less likely to receive standard treatment (OR=0.81, 95%CI=0.68, 0.97) and Hispanics were 23% less likely (OR=0.77, 95%CI=0.66, 0.89). Local breast cancers diagnosed in non-teaching facilities were 21% more likely to receive standard treatment compared to those diagnosed in teaching facilities (OR=1.21; 95%CI=1.05, 1.38)). Compared to single, married women were 51% more likely to get standard treatment (OR=1.51, 95%CI=1.31, 1.66), followed by separated or divorced women that were 37% more likely (OR=1.37, 95%CI =1.13, 1.66). Compared to the privately insured, Medicare beneficiaries were 36% more likely to receive standard treatment (OR=1.36, 95%CI=1.22, 1.51) whereas the uninsured were 24% less likely (OR=0.76, 95%CI=0.59, 0.96); Medicaid insured women were 29% less likely to receive standard treatment compared to the uninsured (OR=0.71, 95%CI=0.53, 0.96). CONCLUSION: Future efforts should target the elderly, Hispanic and black women, the uninsured, and those on Medicaid in order to reduce treatment disparities.

The roles of teaching hospitals, insurance status, and race/ethnicity in receipt of adjuvant therapy for regional-stage breast cancer in Florida.

OBJECTIVES: We examined the roles of teaching hospitals, insurance status, and race/ ethnicity in women's receipt of adjuvant therapy for regional-stage breast cancer. METHODS: Data were taken from the Florida Cancer Data System for cases diagnosed from July 1997 to December 2000. We evaluated the impact of health insurance status and hospital type on use of adjuvant therapy (after adjustment for age, race/ethnicity, and marital status). Interaction terms for hospital type, insurance status, and race/ethnicity were entered in each model. RESULTS: Teaching facilities diagnosed 12.5% of the cases; however, they cared for a disproportionate percentage (21.3%) of uninsured and Medicaid-insured women. Among women who received adjuvant chemotherapy only, those diagnosed in teaching hospitals were more likely than those diagnosed in nonteaching hospitals to receive therapy regardless of insurance status or race/ethnicity. Among women who received chemotherapy with or without hormonal therapy, Hispanics were more likely than White non-Hispanic women to receive therapy, whereas women with private insurance or Medicare were less likely than uninsured and Medicaid-insured women to receive this type of therapy. CONCLUSIONS: Teaching facilities play an important role in the diagnosis and treatment of regional-stage breast cancer among Hispanics, uninsured women, and women insured by Medicaid.

Treatment of local breast carcinoma in Florida: the role of the distance to radiation therapy facilities.

BACKGROUND: Breast-conserving surgery combined with radiation (BCSR) is the recommended alternative treatment to mastectomy for local breast carcinoma. However, limited access to healthcare may result in more extensive surgical treatment. The effect of distance to radiation therapy facilities on the likelihood of receiving BCSR was examined in Florida. METHODS: Local breast carcinomas reported to Florida's statewide registry between July, 1997, and December, 2000 were linked to the Agency of Healthcare Administration inpatient and outpatient databases to supplement the registry's treatment data, resulting in 18,903 local breast carcinoma cases treated with BCSR or mastectomy. The odds of receiving BCSR were modeled as a function of distance to the closest radiation therapy facility, adjusting for health insurance, age, race/ethnicity, and marital status. RESULTS: Distance to the closest radiation therapy facility was negatively associated with BCSR, with the odds ratio (OR) decreasing by 3% per 5-mile increase in distance. Compared with the uninsured, privately insured women were 49% more likely to receive BCSR (OR of 1.49; 95% confidence interval [95% CI], 1.20-1.86) and Medicare patients were 37% more likely (OR of 1.37; 95% CI, 1.09-1.72). Age at diagnosis was negatively associated, reducing the odds of BCSR by 1% per year increase in age. Compared with white non-Hispanic, Hispanic women were 38% less likely to receive BCSR (OR of 0.62; 95% CI, 0.55-0.71). Married women were 23% more likely to receive BCSR compared with singles (OR of 1.23; 95% CI, 1.09-1.40); women who were separated, divorced, or widowed did not differ significantly from single women. CONCLUSIONS: Distance to radiation therapy facilities may negatively impact the likelihood of BCSR in Florida. Age at diagnosis, insurance type, race/ethnicity, and marital status were associated with BCSR. Future efforts should target the uninsured, Hispanics, the elderly, and the unmarried women to reduce disparities in the administration of BCSR for local breast carcinoma.

Cancer trends among Hispanic men in South Florida, 1981-1998.

BACKGROUND: Hispanics now represent a majority of residents in Miami-Dade County, Florida. In this report, the authors present new cancer incidence and mortality data for South Florida's Hispanic men for the period 1990-1998 and compare them with data from a previous report from the 1980s. Periodic updating of cancer incidence data, reflecting current population distribution, lifestyle, and environmental risk factors, is necessary to inform cancer prevention and control activities optimally. METHODS: The study population consisted of all incidents of cancer (1981-1998) occurring in males from Miami-Dade County, as determined from the Florida Cancer Data System data base; patients were divided into two 9-year periods for analysis. Age-standardized incidence and mortality rates were computed for 14 common cancer sites, and rates for Hispanic men were compared with the rates for non-Hispanic white men as standardized rate ratios (SRRs) with 95% confidence intervals (95% CIs). Incidence and mortality trends were determined using linear regression analysis. RESULTS: Nearly 70,000 incident cancer cases were analyzed. For 1990-1998, the top five incident cancers for both race/ethnic groups were the same. The overall decreased cancer risk for Hispanic men (SRR, 0.80; 95% CI, 0.79-0.82), compared with non-Hispanic white men, remained essentially constant over the two study periods. Cancer incidence increased similarly for the two race-ethnic groups; cancer mortality decreased, with a sharper decrease for non-Hispanic white men, resulting in apparent convergence of mortality trends recently. CONCLUSIONS: Differences in cancer risk for South Florida's Hispanic men have not attenuated over the past 20 years. With cancer incidence significantly less for Hispanic men, their mortality rate approaches that of non-Hispanic white men, and cancer prevention and control strategies targeted for this ethnic group become increasingly important.

A feasibility study of the evaluation of the Florida breast cancer early detection program using the statewide cancer registry.

In Florida, a Center for Disease Control and Prevention (CDC)-funded initiative of the Florida Department of Health has targeted socio-economically disadvantaged women for breast and cervical cancer screening. Since 1995, over 12,000 women aged 50-64, within 200% of the federally defined poverty level, with no health insurance, and living in metropolitan catchment areas in Florida, have been screened by the Florida Breast and Cervical Cancer Early Detection Program (BCCEDP). This was a matched cohort cross-sectional analysis of a cohort study of Florida women with breast cancer using the Florida incident cancer registry, the Florida Cancer Data System (FCDS). The study evaluated the hypothesis that there would be no difference in the stage at diagnosis between breast cancer cases in the BCCEDP-screening program and breast cancer cases not diagnosed in the screening program. After linking the BCCEDP records with the FCDS, BCCEDP-screened cases were matched on gender, age, race, ethnicity, and other variables with five groups of FCDS breast cancer cases not screened by BCCEDP to control for demographic and socio-economic factors. Breast cancer cases diagnosed in BCCEDP were significantly more likely to be diagnosed at later stage than non-BCCEDP breast cancer cases in the five matched groups. The BCCEDP is not purely a screening program since it also caters to symptomatic women in the indigent population, therefore these finding were expected. In fact, 71% of the BCCEDP cases were symptomatic at the time of screening/diagnosis and 53% were late-stage diagnosed. These findings show that BCCEDP is indeed servicing its targeted population of medically under-served and symptomatic women in Florida. Furthermore, despite limitations, this study illustrates the potential collaboration between cancer registries and breast cancer screening programs for quality control purposes.