Finding incident cancer cases through outpatient oncology clinic claims data and integration into a state cancer registry.

Cancer data from population-based cancer registries under-report cancer cases, especially for cancers primarily diagnosed and treated in outpatient clinical settings, away from hospital-based cancer registrars. Previously, we developed alternative methods of cancer case capture including a claims-based method, which identified a large proportion of cancer cases missed by traditional population-based cancer registries. In this study, we adapted a claims-based method for statewide implementation of cancer surveillance in Florida. Between 2010 and 2017 the claims-based method identified 143,083 cancer abstracts, of which 42% were new and 58% were previously registered. The claims-based method led to the creation of 53,419 new cancer cases in the state cancer registry, which made up 9.3% of all cancer cases registered between 2010 and 2017. The types of cancers identified by the claims-based method were typical of the kinds primarily diagnosed and treated in outpatient oncology clinic settings, such as hematological malignancies, prostate cancer, melanoma, breast cancer, and bladder cancer. These cases were added to the Florida cancer registry and may produce an artefactual increase in cancer incidence, which is believed to be closer to the actual burden of cancer in the state.

Black Heterogeneity in Cancer Mortality: US-Blacks, Haitians, and Jamaicans.

INTRODUCTION: The quantitative intraracial burden of cancer incidence, survival and mortality within black populations in the United States is virtually unknown. METHODS: We computed cancer mortality rates of US- and Caribbean-born residents of Florida, specifically focusing on black populations (United States, Haiti, Jamaica) and compared them using age-adjusted mortality ratios obtained from Poisson regression models. We compared the mortality of Haitians and Jamaicans residing in Florida to populations in their countries of origin using Globocan. RESULTS: We analyzed 185,113 cancer deaths from 2008 to 2012, of which 20,312 occurred in black populations. The overall risk of death from cancer was 2.1 (95% CI: 1.97-2.17) and 1.6 (95% CI: 1.55-1.71) times higher for US-born blacks than black Caribbean men and women, respectively (P < .001). CONCLUSIONS: Race alone is not a determinant of cancer mortality. Among all analyzed races and ethnicities, including Whites and Hispanics, US-born blacks had the highest mortality rates while black Caribbeans had the lowest. The biggest intraracial difference was observed for lung cancer, for which US-blacks had nearly 4 times greater mortality risk than black Caribbeans. Migration from the islands of Haiti and Jamaica to Florida resulted in lower cancer mortality for most cancers including cervical, stomach, and prostate, but increased or stable mortality for 2 obesity-related cancers, colorectal and endometrial cancers. Mortality results in Florida suggest that US-born blacks have the highest incidence rate of "aggressive" prostate cancer in the world, rather than Caribbean men.

Integration of Cancer Screening Data into Routine Cancer Surveillance Systems: A Florida Pilot Project.

Introduction: Integration of screening data into routine cancer surveillance systems can create more robust data systems to inform cancer prevention and control activities. Currently, state central cancer registries do not routinely collect breast and cervical cancer screening data as part of state cancer surveillance activities. Florida conducted a pilot study involving: (1) linkage of breast and cervical cancer screening data from the Florida Breast and Cervical Cancer Early Detection Program (FBCCEDP) from 2009 to 2021 to the Florida Cancer Data System (FCDS) database to capture screening data for matched cancer cases in the FCDS; and (2) evaluation of the feasibility of developing a population-based breast and cervical cancer screening surveillance system by capturing electronic screening data from private health care providers. Methods: In 2018, the FCDS worked with the Florida Department of Health to identify data partners for the 5-year cancer screening pilot project funded by the Centers for Disease Control and Prevention. Engagement of project partners required extensive review of available screening data; data standards and formatting; data transmission schedules and methods; and processing procedures. The FCDS developed a database to integrate multiple source data sets into a single database whereby linkage to the central cancer registry could be performed. Results: The FCDS worked with Suncoast Health Systems, a clinical practice in the Hillsborough region of Florida, and the FBCCEDP to evaluate data availability, standardization of data sets, and data submission schedules for the pilot project. Extensive meetings and data reviews were conducted with both partners in the first phase of the project. The FCDS developed automated data processing procedures to integrate the data into a single cancer screening database and then linked records to the central cancer registry data set. Discussion: Registry collaboration with the FBCCEDP and Suncoast team on data quality and standardization has produced positive results. The project required extensive review of data and produced many lessons learned for development of a cancer screening surveillance system. Our pilot project depended on partnership building, commitment to data quality, and consistency in data submission practices.

Cancer risk in people infected with human immunodeficiency virus in the United States.

Data are limited regarding cancer risk in human immunodeficiency virus (HIV)-infected persons with modest immunosuppression, before the onset of acquired immunodeficiency syndrome (AIDS). For some cancers, risk may be affected by highly active antiretroviral therapy (HAART) widely available since 1996. We linked HIV/AIDS and cancer registries in Colorado, Florida and New Jersey. Standardized incidence ratios (SIRs) compared cancer risk in HIV-infected persons (initially AIDS-free) during the 5-year period after registration with the general population. Poisson regression was used to compare incidence across subgroups, adjusting for demographic factors. Among 57,350 HIV-infected persons registered during 1991-2002 (median CD4 count 491 cells/mm(3)), 871 cancers occurred during follow-up. Risk was elevated for Kaposi sarcoma (KS, SIR 1,300 [n = 173 cases]), non-Hodgkin lymphoma (NHL, 7.3 [n = 203]), cervical cancer (2.9 [n = 28]) and several non-AIDS-defining malignancies, including Hodgkin lymphoma (5.6 [n = 36]) and cancers of the lung (2.6 [n = 109]) and liver (2.7 [n = 14]). KS and NHL incidence declined over time but nonetheless remained elevated in 1996-2002. Incidence increased in 1996-2002 compared to 1991-1995 for Hodgkin lymphoma (relative risk 2.7, 95%CI 1.0-7.1) and liver cancer (relative risk infinite, one-sided 95%CI 1.1-infinity). Non-AIDS-defining cancers comprised 31.4% of cancers in 1991-1995, versus 58.0% in 1996-2002. For KS and NHL, risk was inversely related to CD4 count, but these associations attenuated after 1996. We conclude that KS and NHL incidence declined markedly in recent years, likely reflecting HAART-related improvements in immunity, while incidence of some non-AIDS-defining cancers increased. These trends have led to a shift in the spectrum of cancer among HIV-infected persons.

Prevalence of family history of kidney disease and perception of risk for kidney disease: a population-based study.

BACKGROUND: A family history of kidney disease is associated with an increased risk for end-stage renal disease (ESRD). However, it is unclear whether blacks are more likely to have a family history of ESRD than other groups independently of kidney disease risk factors. Moreover, their risk perception for kidney disease is unknown. METHODS: The association of race with family history of ESRD and perception of risk for kidney disease was examined in a representative random sample of 402 Georgia residents who completed a telephone interview. Logistic regression analysis was used to derive adjusted odds ratios and 95% confidence intervals for the association between race and family history of ESRD, controlling for age, sex, education level, being a Georgia native, diabetes, hypertension, and personal history of kidney disease. A multinomial logit model was used to derive adjusted estimates for the association between race and perception of risk for kidney disease. RESULTS: Mean age was 43.2 years, 41.0% of respondents were men, 20.1% were black, 6.6% had diabetes, 21.4% had hypertension, 1.6% had a personal history of kidney disease, and 3.7% reported a family member with ESRD. Although blacks were more likely to report a family history of ESRD (odds ratio, 6.43; 95% confidence interval, 2.02 to 20.43), their perception of risk was not greater. CONCLUSION: Although blacks are approximately 6 times as likely to report a family history of ESRD independently of a personal history of kidney disease, diabetes, or hypertension, they do not perceive themselves as more vulnerable for kidney disease.

Results of Florida's Amyotrophic Lateral Sclerosis Surveillance Project, 2009-2011.

OBJECTIVE: Studies to determine the incidence and prevalence of amyotrophic lateral sclerosis (ALS) in defined geographic areas in the USA are needed. The Florida Department of Health received funding from the federal Agency for Toxic Substances and Disease Registry to implement a state-wide ALS Surveillance Project. The objectives of the project were to describe the demographic characteristics of ALS cases and to calculate the incidence and prevalence of ALS in Florida. SETTING/PARTICIPANTS: All neurologists were asked to submit case reports for persons with ALS diagnosed and/or under their care during 1 January 2009 through 31 December 2011. A medical record verification form and an electromyogram (EMG) report were requested for a sample of cases and reviewed by an independent consulting neurologist to confirm ALS diagnosis. Death data were used to aid with case report collection. PRIMARY AND SECONDARY OUTCOME MEASURES: Demographics, relevant history and clinical characteristics, El Escorial classifications, time from symptom onset to diagnosis, crude annual incidence rates and 2009 period prevalence are presented. RESULTS: The 1450 reported ALS cases were more likely to be older, male, white and non-Hispanic. Slightly more than 4% of cases were reported as also having dementia, and 4.8% were reported to have an immediate family member diagnosed with ALS. Incidence rates ranged from 1.7 to 1.9 per 100,000 person-years during the project period and the 2009 period prevalence was 4.0 per 100,000 persons. CONCLUSIONS: Project findings are generally consistent with findings of population-based studies in Europe, as well as geographically limited studies in the USA. Our findings add to the growing body of epidemiological literature about ALS in the USA. Future epidemiological studies in the USA should focus on identifying cases from minority groups and those that may have limited access to healthcare, and should consider conducting capture-recapture analysis to assess case ascertainment.