Completeness of American Cancer Registry Treatment Data: Implications for Quality of Care Research

ArticleinJournal of the American College of Surgeons 216(3) · January 2013with4 Reads
DOI: 10.1016/j.jamcollsurg.2012.12.016 · Source: PubMed
Background: Evaluating and improving the quality of cancer care requires complete information on cancer stage and treatment. Hospital-based registries are a key tool in this effort, but reports in the 1990s showed that they fail to identify a major fraction of outpatient-administered treatment, including chemotherapy, endocrine therapy, and radiation. This can limit their value for evaluating patterns and quality of care. To determine the completeness of registry data in more recent years, we linked administrative claims from 2 private payers in Ohio to the National Cancer Data Base and Ohio Cancer Incidence and Surveillance System. Methods: Incident breast and colorectal cancers among Ohio residents diagnosed in 2004-2006 were identified from linkage of the National Cancer Data Base, Ohio Cancer Incidence and Surveillance System, and payer insurance claims using ICD-9 and CPT procedure codes, and ICD-9 diagnosis codes. Linkage was accomplished using patient demographics, surgery dates, and hospital facility. Treatment found in claims and registry data were compared and assessed using the κ statistic. Results: The analytic cohort included 2,552 breast and 822 colorectal cases. Results showed high agreement for breast surgery type, and moderately high agreement for colorectal surgery type. For breast cases, the registries captured 87% of chemotherapy, 86% of radiation, and 64% of endocrine treatment in claims. For colorectal cases, the registry captured 83% of chemotherapy and 84% of radiation in claims. Conclusions: Hospital-based registries for breast and colon cancer diagnosed in 2004-2006 captured about 85% of radiation and chemotherapy data compared with claims data, a higher percentage than earlier reports. These findings provide direction and a cautionary note to those using registry data for study of patterns and quality of systemic and radiation therapy care.
    • "To evaluate data validity regarding the consistency of the core data elements in the paper and electronic forms, a linkage between the two data entry forms was made. Adapting the data matching method suggested in the literature concerning the assessment of data quality in a cancer registry [14], the linkage of malaria-infected cases between paper and electronic forms was accomplished using patient demographics, blood drawn date, and health care facility location. Such data elements were matched to confirm that each analyzed pair belonged to the same person who was infected at the same time point and was residing in the same location. "
    [Show abstract] [Hide abstract] ABSTRACT: Background: In moving toward malaria elimination, one strategy is to implement an active surveillance system for effective case management. Thailand has developed and implemented the electronic Malaria Information System (eMIS) capturing individualized electronic records of suspected or confirmed malaria cases. Objective: The main purpose of this study was to determine how well the eMIS improves the quality of Thailand's malaria surveillance system. In particular, the focus of the study was to evaluate the effectiveness of the eMIS in terms of the system users' perception and the system outcomes (ie, quality of data) regarding the management of malaria patients. Methods: A mixed-methods technique was used with the framework based on system effectiveness attributes: data quality, timeliness, simplicity, acceptability, flexibility, stability, and usefulness. Three methods were utilized: data records review, survey of system users, and in-depth interviews with key stakeholders. From the two highest endemic provinces, paper forms matching electronic records of 4455 noninfected and 784 malaria-infected cases were reviewed. Web-based anonymous questionnaires were distributed to all 129 eMIS data entry staff throughout Thailand, and semistructured interviews were conducted with 12 management-level officers. Results: The eMIS is well accepted by system users at both management and operational levels. The data quality has enabled malaria personnel to perform more effective prevention and control activities. There is evidence of practices resulting in inconsistencies and logical errors in data reporting. Critical data elements were mostly completed, except for a few related to certain dates and area classifications. Timeliness in reporting a case to the system was acceptable with a delay of 3-4 days. The evaluation of quantitative and qualitative data confirmed that the eMIS has high levels of simplicity, acceptability, stability, and flexibility. Conclusions: Overall, the system implemented has achieved its objective. The results of the study suggested that the eMIS helps improve the quality of Thailand's malaria surveillance system. As the national malaria surveillance system, the eMIS's functionalities have provided the malaria staff working at the point of care with close-to-real-time case management data quality, covering case detection, case investigation, drug compliance, and follow-up visits. Such features has led to an improvement in the quality of the malaria control program; the government officials now have quicker access to both individual and aggregated data to promptly react to possible outbreak. The eMIS thus plays one of the key roles in moving toward the national goal of malaria elimination by the next decade.
    Full-text · Article · May 2016
    • "Second, missing chemotherapy data was modest and did not differ between this study's AA and NHWA samples. Third, analyses of health insurance, surgeries and survival were unlikely to have been affected40414243 and modest errors very likely did not differ by socioeconomic factors [41]. Such nondifferential errors suggest that any bias would probably have been toward the null [44,45]. "
    [Show abstract] [Hide abstract] ABSTRACT: Despite evidence of chemotherapy's ability to cure or comfort those with colon cancer, nearly half of such Americans do not receive it. African Americans (AA) seem particularly disadvantaged. An ethnicity by poverty by health insurance interaction was hypothesized such that the multiplicative disadvantage of being extremely poor and inadequately insured is worse for AAs than for non-Hispanic white Americans (NHWA). California registry data were analyzed for 459 AAs and 3,001 NHWAs diagnosed with stage II to IV colon cancer between 1996 and 2000 and followed until 2011. Socioeconomic data from the 2000 census categorized neighborhoods: extremely poor (>= 30% of households poor), middle (5-29% poor) and low poverty (< 5% poor). Participants were randomly selected from these poverty strata. Primary health insurers were Medicaid, Medicare, private or none. Chemotherapy rates were age and stage-adjusted and comparisons used standardized rate ratios (RR). Logistic and Cox regressions, respectively, modeled chemotherapy receipt and long term survival. A significant 3-way ethnicity by poverty by health insurance interaction effect on chemotherapy receipt was observed. Among those who did not live in extremely poor neighborhoods and were adequately insured privately or by Medicare, chemotherapy rates did not differ significantly between AAs (37.7%) and NHWAs (39.5%). Among those who lived in extremely poor neighborhoods and were inadequately insured by Medicaid or uninsured, AAs (14.6%) were nearly 60% less likely to receive chemotherapy than were NHWAs (25.5%, RR = 0.41). When the 3-way interaction effect as well as the main effects of poverty, health insurance and chemotherapy was accounted for, survival rates of AAs and NHWAs were the same. The multiplicative barrier to colon cancer care that results from being extremely poor and inadequately insured is worse for AAs than it is for NHWAs. AAs are more prevalently poor, inadequately insured, and have fewer assets so they are probably less able to absorb the indirect and direct, but uncovered, costs of colon cancer care. Policy makers ought to be cognizant of these factors as they implement the Affordable Care Act and consider future health care reforms.
    Full-text · Article · Mar 2014
    • "Second, missing chemotherapy data were infrequent and did not differ between this study's Ontario and California cohorts. Third, analyses of insurers, hospital-based surgeries, and survival were unlikely to have been affected (Chan, Gomez, O'Malley, Perkins, & Clark, 2006; Hall, Schulze, Groome, Mackillop, & Holowaty , 2006; Li, King, deGara, White, & Winget, 2012; Mallin et al., 2013; Verrill, 2010), and any modest errors very likely did not differ by socioeconomic factors (Chan et al., 2006). Such modest nondifferential errors on exposures, mediators, or outcomes suggest that any bias of findings would probably have been toward the null (Blakely, McKenzie, & Carter, 2013; Copeland, Checkoway, McMichael, & Holbrook, 1977; Jurek, Greenland, & Maldonado, 2008). "
    [Show abstract] [Hide abstract] ABSTRACT: Extremely poor Canadian women were recently observed to be largely advantaged on most aspects of breast cancer care as compared with similarly poor, but much less adequately insured, women in the United States. This historical study systematically replicated the protective effects of single- versus multipayer health care by comparing colon cancer care among cohorts of extremely poor women in California and Ontario between 1996 and 2011. The Canadian women were again observed to have been largely advantaged. They were more likely to have received indicated surgery and chemotherapy, and their wait times for care were significantly shorter. Consequently, the Canadian women were much more likely to experience longer survival times. Regression analyses indicated that health insurance nearly completely explained the Canadian advantages. Implications for contemporary and future reforms of U.S. health care are discussed.
    Full-text · Article · Nov 2013
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