Completeness Of Cancer Registry Research Articles

Operational Feasibility of Hospital-Based Cancer Registries in Low- and Middle-Income Countries: A Systematic Review.

Cancer registration is crucial for any country's cancer surveillance and management program. However, there is a lack of systematic evidence on the operational feasibility of hospital-based cancer registries (HBCRs) in low- and middle-income countries (LMICs). We systematically reviewed and described the challenges and prospects of HBCRs in LMICs. We reported the study according to thePreferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines. Electronic databases such as MEDLINE, EMBASE, Web of Science, ProQuest, and CINAHL were searched. Peer-reviewed studies published between January 1, 2000 and June 30, 2021 were included. We used thematic analysis to synthesize the findings discussing barriers and enablers of HBCRs. Thirteen studies were eligible for the analysis after eliminating duplicates, screening of title and abstract, and full-text review. The determinants, registry functionality, data management and abstraction, data security, data quality, organizational readiness, and perception of registry staff influence the implementation of HBCRs. In LMICs, many registries lacked functional documentation and data management systems due to a shortage of skilled professionals. However, in many instances, physicians and patients communicated via digital media, which helped obtain accurate data. The HBCR completeness rate was high in Ethiopia, China, Thailand, and Tanzania. Qualification and capacity building of the data managers was linked to the completeness and accuracy of the registry data, which led to sustainability. In addition, a few registries implemented new worksheets to enhance documentation. This review highlights the need for additional digitalization of the cancer registry to improve its functionality, completeness, follow-up, and output. Further, physicians and data managers require regular training to address cancer registry completeness and reduce errors.

Exploring the impact of cancer registry completeness on international cancer survival differences: a simulation study

BackgroundData from population-based cancer registries are often used to compare cancer survival between countries or regions. The ICBP SURVMARK-2 study is an international partnership aiming to quantify and explore the reasons behind survival differences across high-income countries. However, the magnitude and relevance of differences in cancer survival between countries have been questioned, as it is argued that observed survival variations may be explained, at least in part, by differences in cancer registration practice, completeness and the availability and quality of the respective data sources.MethodsAs part of the ICBP SURVMARK-2 study, we used a simulation approach to better understand how differences in completeness, the characteristics of those missed and inclusion of cases found from death certificates can impact on cancer survival estimates.ResultsBias in 1- and 5-year net survival estimates for 216 simulated scenarios is presented. Out of the investigated factors, the proportion of cases not registered through sources other than death certificates, had the largest impact on survival estimates.ConclusionOur results show that the differences in registration practice between participating countries could in our most extreme scenarios explain only a part of the largest observed differences in cancer survival.

Using the SEER-Medicare Data to Assess Incident Chronic Myeloid Leukemia and Bladder Cancer Cases Missed by Cancer Registries.

The growing use of oral systemic therapies and transition of some cancer treatments to the outpatient setting makes capturing all cancer case patients more difficult. We aim to develop algorithms to identify potentially missed incident case patients and estimate impact on incidence rates. We reviewed claims from SEER-Medicare 5% noncancercontrol patient sample to identify potentially missed chronic myeloid leukemia (CML) and bladder case patients based on diagnosis codes, cancer-related treatments, and oncology consultations. Observed rates of definite missed CML and definite and probable missed bladder case patients were calculated and the impact of missed case patients of these two cancers on SEER 65+ incidence rates were estimated. From 2008 to 2015, the algorithm estimated 781 definite CML case patients missed, increasing the number by 10.7%. From 2007 to 2015, the algorithm estimated 4629 definite and 5772 probable bladder case patients missed, increasing the number by 3.8% to 8.1%. Our algorithms offer potential methods for identifying missed case patients and validating the completeness of cancer registries.

Estimation of lung and bronchial cancer registry completeness via capture-recapture method using population-based cancer registry in Khuzestan province in 2011

IntroductionPopulation-based cancer registry (PBCR) plays a significant role in burden of cancer estimation. Estimating the completeness of cancer registry is one of the criteria to assess the quality of data (results). Also, Capture-recapture is one of the methods used to assess completeness of cancer registry. ObjectiveThis study was aimed to estimate the completeness of lung and bronchial cancer registry using three-source capture-recapture method in Khuzestan province. Materials and methodsThis study was carried out using three-source capture-recapture method and data were obtained from three sources including medical records, death certificates and pathology labs (reports) in Khuzestan. In this study, total new cases of lung and bronchial cancer registered by the three sources in 2011, were enrolled. Among the sources, the common cases were identified and the completeness rate of lung and bronchial cancer registry was calculated by log-linear method using R software, finally. ResultsTotally, 426 new cases for lung cancer had reported from the three sources in 2011. The completeness index of lung cancer registry was totally estimated 72%, as well as it was independently 40%, 25% and 37.6% for the medical records, pathology reports and death certificates sources, respectively. ConclusionAccording to the results, after collection and remove repetition of the cases related to lung cancer, it should be added their number registered by the pathology (labs), medical records and death certificates sources by 28%–40%, to estimate actual incidence of lung cancer. Also, the actual incidence of lung cancer cases related to each of medical records, pathology and death certificates was calculated by adding the reported values by 60%, 75% and 63%, respectively.

Data Reliability and Coding Completeness of Cancer Registry Information Using Reabstracting Method in the National Cancer Institute: Thailand, 2012 to 2014.

PurposeData quality is a core value of cancer registries, which bring about greater understanding of cancer distribution and determinants. Thailand established its cancer registry in 1986; however, studies focusing on data reliability have been limited. This study aimed to assess the coding completeness and reliability of the National Cancer Institute (NCI) hospital-based cancer registry, Thailand.MethodsThis study was conducted using the reabstracting method. We focused on seven cancer sites—the colon, rectum, liver, lung, breast, cervix, and prostate—registered between 2012 and 2014 in the NCI hospital-based cancer registry. Missing data were identified for coding completeness calculation among important variables. The agreement rate and κ coefficient were computed to represent data reliability.ResultsFor reabstracting, we retrieved 957 medical records from a total of 5,462. These were selected using the probability proportional to size method, stratified by topology, sex, and registered year. The overall coding completeness of the registered and reabstracted data was 89.9% and 93.6%, respectively. In addition, the overall agreement rate among variables ranged from 84.7% to 99.6%, and κ coefficient ranged from 0.619 to 0.995. The misclassification among unilateral organs caused lower coding completeness and agreement rate of laterality coding. The completeness of current residency could be improved using the reabstracting method. The lowest agreement rate was found among various categories of diagnosis basis. Sex misclassification for male breast cancer was identified.ConclusionThe coding completeness and data reliability of the NCI hospital-based cancer registry met the standard in most critical variables. However, some challenges remain to improve the data quality. The reabstracting method could identify the critical points affecting the quality of cancer registry data.

Completeness of cancer registry data in a small Iranian province: A capture-recapture approach.

The incidence of cancer is rising in Iran, and hence it is important to assess the accuracy of the Iranian cancer registry dataset. In this study, the completeness of the cancer registry in the Kohgiluyeh and Boyer-Ahmad (K&B) province is evaluated. The data of registered cases of cancer of people who were living in the K&B province at the time of diagnosis were obtained from the provincial cancer registry offices in K&B, Fars and all other neighbouring provinces. A capture-recapture method along with log-linear statistical modelling were used for analysis. The results indicated that of 2029 known cases of cancer, only 1400 (31%) were registered by the K&B cancer registry office. Age-adjusted incidence rates for all common types of cancer rose from 307.0 per 100,000 (95% confidence interval (CI); 293.8, 320.3, based on observed cases) to 376.4 per 100,000 (95% CI; 361.7, 391.1, based on expected number of cases estimated by capture-recapture analysis) ( p < 0.01). The completeness of cancer registry data varied significantly for different types of cancer. Results suggest that the provincial cancer dataset, which is a part of the national cancer registry programme, is neither complete nor representative. A major improvement in case finding, registry procedures and effective data sharing by provincial cancer registry offices is needed in order to provide valid data for epidemiology of cancer in Iran.

Estimating the Completeness of Lung Cancer Registry in Ardabil, Iran with a Three-Source Capture-Recapture Method.

Cancer registration is an important component of a comprehensive cancer control program, providing timely data and information for research and administrative use. Capture-recapture methods have been used as tools to investigate completeness of cancer registry data. This study aimed to estimate the completeness of lung cancer cases registered in Ardabil Population Based Cancer Registry (APBCR) with a three-source capture-recapture method. Data for all new cases of lung cancer reported by three sources (pathology reports, death certificates, and medical records) to APBCR for 2006 and 2008 were obtained. Duplicate cases shared among the three sources were identified based on similarity of first name, last name and father's names. A log-linear model was used to estimate number of missed cases and to control for dependency among sources. A total of 218 new cases of lung cancer was reported by three sources after removing duplicates. The estimated completeness calculated by log-linear method was 26.4 for 2006 and 27.1 for 2008. The completeness differed according to gender. In men, the completeness was 26.0% for 2006 and 28.1 for 2008. In women, the completeness was 36.5% for 2006 and 46.9 for 2008. In conclusion, none of the three sources can be considered as a reliable source for accurate cancer incidence estimation.

Bayesian estimation of a cancer population by capture-recapture with individual capture heterogeneity and small sample.

BackgroundCancer incidence and prevalence estimates are necessary to inform health policy, to predict public health impact and to identify etiological factors. Registers have been used to estimate the number of cancer cases. To be reliable and useful, cancer registry data should be complete. Capture-recapture is a method for estimating the number of cases missed, originally developed in ecology to estimate the size of animal populations. Capture recapture methods in cancer epidemiology involve modelling the overlap between lists of individuals using log-linear models. These models rely on assumption of independence of sources and equal catchability between individuals, unlikely to be satisfied in cancer population as severe cases are more likely to be captured than simple cases.MethodsTo estimate cancer population and completeness of cancer registry, we applied Mth models that rely on parameters that influence capture as time of capture (t) and individual heterogeneity (h) and compared results to the ones obtained with classical log-linear models and sample coverage approach. For three sources collecting breast and colorectal cancer cases (Histopathological cancer registry, hospital Multidisciplinary Team Meetings, and cancer screening programmes), individual heterogeneity is suspected in cancer population due to age, gender, screening history or presence of metastases. Individual heterogeneity is hardly analysed as classical log-linear models usually pool it with between-“list” dependence. We applied Bayesian Model Averaging which can be applied with small sample without asymptotic assumption, contrary to the maximum likelihood estimate procedure.ResultsCancer population estimates were based on the results of the Mh model, with an averaged estimate of 803 cases of breast cancer and 521 cases of colorectal cancer. In the log-linear model, estimates were of 791 cases of breast cancer and 527 cases of colorectal cancer according to the retained models (729 and 481 histological cases, respectively).ConclusionsWe applied Mth models and Bayesian population estimation to small sample of a cancer population. Advantage of Mth models applied to cancer datasets, is the ability to explore individual factors associated with capture heterogeneity, as equal capture probability assumption is unlikely. Mth models and Bayesian population estimation are well-suited for capture-recapture in a heterogeneous cancer population.Electronic supplementary materialThe online version of this article (doi:10.1186/s12874-015-0029-7) contains supplementary material, which is available to authorized users.

Evaluation of cancer surveillance completeness among the Italian army personnel, by capture–recapture methodology

Objective: This study provides an assessment of completeness of cancer surveillance and incidence estimates for all malignancies, Hodgkin's lymphoma and thyroid cancer in the Italian army, for the years 2001–2007. Methods: The two-source capture–recapture method was employed, using both Chapman's and Chao's formulae, on the basis of cancer notifications from military hospitals and unit infirmaries. The estimated incident cases were then confronted with the corresponding expected cases; the standardized incidence ratios and 95% confidence intervals (SIR [95% CI]) were then calculated. Results: A total of 442 cancer notifications, concerning 371 cases, were reported (311 from army hospitals and 131 from unit infirmaries; of these, 71 were overlapping). The estimated total number of cases, by Chapman's and Chao's formulae, was 571 and 688, respectively. Overall, sensitivity of the surveillance system was 65% by Chapman's and 54% by Chao's estimators. Completeness of notification was significantly higher in younger patients, in those previously deployed in Bosnia or Kosovo, and for cases of Hodgkin's lymphoma. Estimated SIRs, using both formulae, were not significant for all malignancies and Hodgkin's lymphoma, but significant for thyroid cancer (SIR: 2.25 [1.61–2.89] by Chapman's formula, and 3.12 [1.81–4.43] by Chao's estimator). Conclusion: Completeness of cancer registry of the Italian military is low, and methods to improve its sensitivity are discussed. Overall, the estimated number of incident cancer cases, including Hodgkin's lymphoma, is not significantly higher than expected, except thyroid cancer. The increased incidence of this malignancy requires further investigation; however, in the military, as well as in the general population, this may be partly due to the growing availability of diagnostic opportunities in the last decades. Moreover, detection of thyroid cancer may be further facilitated by a selection bias generated by the annual and pre-/post-deployment medical examinations and blood tests routinely performed on all military personnel.

Evaluation of childhood acute leukemia incidence and underreporting in Brazil by capture–recapture methodology

Background: Population-based cancer registries (PBCR) are important in cancer epidemiology as they provide the basis for monitoring cancer incidence. Childhood acute lymphoblastic leukemia (ALL) is said to have lower incidence in developing countries, which has implications for its pathogenesis, but there are few studies concerning the completeness of cancer registries in developing countries. This study analyzes the number of cases and incidence of childhood acute lymphoblastic leukemia in three different cities in Brazil and estimates underreporting cases and possible PBCR failures. Methods: We evaluated the completeness of PBCR and the incidence rates of childhood ALL from three different Brazilian cities using the two-source capture–recapture method. The sources used were a population-based registry and databases from a diagnosis reference laboratory in 2001 and the Chapman's formula was used to calculate the estimates. Results: The estimated incidence was 5.76, 6.32 and 5.48 per 100,000 inhabitants for Salvador, Recife and Belo Horizonte, respectively. The estimated completeness of childhood ALL in PBCRs was 15.5%, 35.4% and 29.2%, respectively, for Salvador, Recife and Belo Horizonte. Conclusions: There was a high estimated underreporting of childhood leukemia cases in some Brazilian cities. The relationship between information systems and the capture–recapture method application improved epidemiological estimates. Childhood acute lymphoblastic leukemia incidence rates are similar to those of developed countries.

A Mathematical Estimation of True Cancer Incidence Using Data from Population-based Cancer Registries

Accurate cancer incidence data are needed to plan, monitor and evaluate national cancer control programs. In Japan, however, such information is not available owing to incomplete cancer registries. In order to attain incidence estimation adjusted to account for this incomplete information, we have developed a new method. We developed a nonlinear regression model between observed incidence/mortality ratios and proportions of death certificate notification to observed incidence in various cancer registries. This model enables us to obtain the 'true incidence/mortality ratio', which, in the regression curve, is at zero point for the proportion of death certificate notifications. This is an ideal registration state without any missing cases. By multiplying it by the number of cancer mortalities from the National Vital Statistics, corrected cancer incidence can be estimated. Applying this method for the estimation of the Japanese cancer incidence in 1997, we obtained the 'true incidence/mortality ratios' of 2.074 for men and 2.587 for women. Cancer incidences in Japan for 1997 were thus estimated to be 346,000 for men and 280,000 for women. A new method is proposed to estimate the national cancer incidence after adjusting for completeness of cancer registries. This method enables us to more accurately estimate the cancer incidence in a country where several cancer registries exist with various degrees of completeness of registration.

An application of the two-source capture–recapture method to estimate the completeness of the Tuscany Cancer Registry, Italy

The purpose of this study was to apply a two-way capture-recapture method to estimate the Tuscany Cancer Registry completeness, taking into account the presence of dependence between sources. Cases incident during 1995-1996 were flagged according to three sources of information: clinical notes, pathological reports and death certificates. For each group of cases notified by one source the dependence between the other two has been quantified and the completeness has been estimated by a two-way capture-recapture method. When only two (or substantially two) sources are dependent on each other it is possible to correct for it by pooling the two sources in a single group and comparing it with the remainder source by a two-way capture-recapture method. The capture-recapture method has been applied to the overall 12 387 incident cases and to 1569 female breast and 1443 lung cancer cases. After correction for the greatest dependence among the three couples of sources of information, the estimates of completeness were 97.4% for the whole case series, 88.7% for female breast and 99.6% for lung cancer. With the limit of multiple strong dependence between sources, the two-way capture-recapture method seems a simple and useful tool for estimating the completeness of cancer registration.

AIDS and Cancer Registry Linkage: Measurement and Enhancement of Registry Completeness

Background and methods. To measure AIDS registry completeness for Kaposi′s sarcoma (KS) and cancer registry completeness for KS and non-Hodgkin′s lymphoma (NHL), we linked AIDS and cancer registries at selected health departments. Results. We found 10,350 people with KS: 1,935 reported only to the AIDS registry, 1,428 reported only to the cancer registry, and 6,987 reported to both. Ninety-three cases of non-HIV-associated KS were expected. For KS, AIDS registry completeness was 84% [6,987/(6,987 + 1,428 − 93)] and cancer registry completeness was 78% [6,987/(6,987 + 1,935)]. Cancer registry completeness for AIDS-related NHL was 76%. Conclusion. If this linking were conducted nationally, about 5,700 additional cases of AIDS and 10,000 additional cases of AIDS-related cancers would be recorded.

General practitioners and completeness of cancer registry.

The aim of the study was to evaluate the role of the general practitioner as a source of information for a cancer registry. The study involved a random sample of respondents to a letter inviting participation which was sent to all general practitioners in a specific area. Participating doctors were visited to maximise cooperation. Data collection consisted of setting up a retrospective (prevalence) registry of cancer patients diagnosed over a 20 month period, and a prospective (incidence) register over a subsequent 12 month period. The general practitioner cancer file was then linked to the total cancer registry data base to estimate missed cases. The study took place in the catchment area of the Comprehensive Cancer Centre Middle-Netherlands (IKMN). Of 448 general practitioners in the IKMN region, 152 were willing to participate and of these 52 were randomly selected to take part (11% of all general practitioners in the region). A total of 1637 tumours were identified from the general practitioners, of which 252 (15.4%) were not included in the cancer registry. Of these, only 22 (1.3%) were not included in the registry because they had tumours diagnosed clinically in outpatients and therefore had been omitted from the usual sources of information available to the cancer registry (pathology reports, hospital discharge letters). The missed cases were mostly older patients with digestive tract tumours. On cost-benefit grounds it was not considered feasible to initiate an active cancer registration system among general practitioners, provided that notification of pathological examinations to the registry is complete. Limited under-registration will occur when death certificates cannot be used as an additional source of information.