Quality Of Cancer Registry Data Research Articles

Application of Rupantaran software to Sri Lankan hospitals: an innovative tool developed to merge population-based cancer registry data into CanReg5.

The purpose of a population-based cancer registry is to provide information on the disease burden for cancer control planning and is essential in studies on assessing the effectiveness of prevention, early detection, screening and cancer care interventions, where implemented. Sri Lanka is one of the Member States of the World Health Organisation's South-East Asia Region and receives technical support for cancer registration from the International Agency for Research on Cancer (IARC), and the IARC Regional Hub based at the Tata Memorial Centre in Mumbai, India. For data management of cancer registry records, Sri Lanka National Cancer Registry (SLNCR) uses the open-source registry software tool, CanReg5, as developed by IARC. The SLNCR has received data from 25 centres located across the country. Inputted data from the respective centres was then exported from various CanReg5 systems to the main centre in Colombo. As the import to the central CanReg5 system held in the capital is manual, the records were manually modified to avoid any duplicate entries, and the quality of data was compromised. To overcome this issue, a new software tool, Rupantaran, has been created and developed by IARC Regional Hub, Mumbai to help merge the records from different centres. Rupantaran was tested and implemented successfully at the SLNCR with 47,402 merged records. The Rupantaran software has proven beneficial in maintaining the quality of cancer registry data by avoiding manual errors, thus enabling rapid analysis and dissemination, a limiting factor previously.

Development and validation of an automated basal cell carcinoma histopathology information extraction system using natural language processing.

Routinely collected healthcare data are a powerful research resource, but often lack detailed disease-specific information that is collected in clinical free text such as histopathology reports. We aim to use natural Language Processing (NLP) techniques to extract detailed clinical and pathological information from histopathology reports to enrich routinely collected data. We used the general architecture for text engineering (GATE) framework to build an NLP information extraction system using rule-based techniques. During validation, we deployed our rule-based NLP pipeline on 200 previously unseen, de-identified and pseudonymised basal cell carcinoma (BCC) histopathological reports from Swansea Bay University Health Board, Wales, UK. The results of our algorithm were compared with gold standard human annotation by two independent and blinded expert clinicians involved in skin cancer care. We identified 11,224 items of information with a mean precision, recall, and F1 score of 86.0% (95% CI: 75.1-96.9), 84.2% (95% CI: 72.8-96.1), and 84.5% (95% CI: 73.0-95.1), respectively. The difference between clinician annotator F1 scores was 7.9% in comparison with 15.5% between the NLP pipeline and the gold standard corpus. Cohen's Kappa score on annotated tokens was 0.85. Using an NLP rule-based approach for named entity recognition in BCC, we have been able to develop and validate a pipeline with a potential application in improving the quality of cancer registry data, supporting service planning, and enhancing the quality of routinely collected data for research.

Abstract OT-10-01: A study to observe patients characteristics, treatment patterns and outcomes in patients with newly diagnosed breast cancer in Latin America - LATINA breast (LACOG 0615/ MO39485)

Abstract Background: Breast cancer (BC) is the most common malignancy and one of the leading causes of cancer death in Latin American women, with an estimated age-standardized annual incidence of 38.3 and 56.8 and mortality rates of 10.1 and 13.4 cases per 100,000 females, in Central and South America respectively. However, BC incidence in Latin America (LATAM)is largely underestimated and lacks updated information. Furthermore, the shortage and quality of cancer registry data hinders a more reliable assessment of treatment and outcomes for these patients. The goals of LATINA Breast study is to build an electronic platform/database to allow a standardized collection of epidemiological data of BC in LATAMin addition to describe real world data on patients characteristics, treatment patterns and outcomes of this population. Methods: LATINA Breast (LACOG 0615) is a prospective, international, multicentre and non-interventional study of primary data collection designed to describe the diagnosis, oncologic treatment and outcomes of patients with BC in LATAM. Patients aged ≥ 18 years with stage I to IV newly diagnosed BC (i.e. <12 months since site activation) will be considered eligible for inclusion.Patient data will be collected from medical records at diagnosis and every 6 months for up to 5 years of follow-up. At baseline, data on socioeconomic, demographic, medical history and BC clinicopathological characteristics will be collected. Thereafter, information regarding treatment patterns, sequencing, response to treatment, adverse events, disease relapse/ progression and overall survival will be collected at each time-point. This study has a planned sample size of a minimum of 2.200 to a maximum of 4.500 patients accrued from approximately 30 sites in 10 LATAM countries: Argentina, Brazil, Cuba, Colombia, Chile, Dominican Republic, Ecuador, Mexico, Peru and Uruguay. The expected number of patients per country is based on age-standardize BC incidence rate by GLOBOCAN 2012 and not in a formal statistical estimation.Co-primary endpoints are (1) to describe patients’ characteristics, prevalence of BC subtypes at diagnosis, local and systemic treatment patterns and outcomes; (2) to build an electronic platform/database of epidemiological data of BC in LATAM. Secondary endpoints are to evaluate regional differences in treatment strategies, to describe treatment efficacy parameters such as locoregional relapse, invasive disease-free survival, progression-free survival, overall survival and to evaluate treatment safety. The trial is registered at clinicaltrials.gov NCT04158258.Results The first site was activated for patient accrual on February 13, 2020, in Argentina. As of July 6, 2020, a total of 243 patients have been included in Argentina (n=81), Brazil (n=123), Colombia (n=37), and Guatemala (n=2) within 19 active sites. Regulatory approval and activation are ongoing in the other countries. Recruitment is estimated to last until December 2021 to achieve the planned sample size. Patients will be followed-up for 5 years, therefore we estimate the last follow-up data collection in December 2026. ConclusionLATINA Breast is the first multinational, prospective cohort study of BC in Latin America that will generate detailed information on diagnosis, treatment and outcome in real-world clinical practice. It will address important gaps in BC management and will likely single out some of the main inequities in this large and diverse population of BC patients and consequently support strategies for the improvement of BC cancer care in LATAM. Citation Format: Gustavo Werutsky, Cynthia Villareal-Garza, Henry Gomez, Juan Manuel Donaire, José Bines, Luis Fein, Mariano Nicolas Carrizo, Facundo Zaffaroni, Paulo Ricardo Nunes Filho, Carlos H Barrios. A study to observe patients characteristics, treatment patterns and outcomes in patients with newly diagnosed breast cancer in Latin America - LATINA breast (LACOG 0615/ MO39485) [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr OT-10-01.

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.

Quality Assessment of the National Cancer Registry in Iran: Completeness and Validity

Introduction: Cancer Registry is one of the important components of health information systems in developing countries. Continuous monitoring of data quality can have a crucial role in controlling cancers. This study aimed to assess the quality of cancer registry data in terms of completeness of coverage and validity. Methods: Data were collected from three main sources, including Pathology registry, Hospital and national death registries in five provinces in Iran during March 2008-March 2011. We used two source capture-recapture method for estimate of cancer registry coverage and measures of validity were percentage of death certificate only (DCO%), histological verified cases (MV%); cancer incidence in childhood based on sex and age group, percentage of cancer in the elderly (80 years or above) and mortality-to-incidence ratio (M:I).We compared them to international standards. Results: The overall completeness was estimated at 54.2% and 32.4% under reporting for stomach cancer in a period of three years (2008 - 2010). MV% and percentage of unknown primary site of the tumor were 68.7%, and 5% respectively. The mortality-to-incidence ratio for men and women was 37.6% and 28.2%, and percentage of cancer in the elderly was 10.9% in 2010 year. The age-specific rate in girls and boys in age groups of 5 - 9 and 10 - 14 years was lower than minimum of the recommended international standards. Conclusions: The results of this study showed data quality of cancer registry is relatively low in terms of the completeness and validity. Cancer registries should pay great attention to the quality of their data. In addition to technical measures in data processing, continuous evaluation of their quality in order to achieve the set goals is essential.

Quality of Cancer Registry Data: Botswana Experience, Demonstrating Improvements Over Time

Abstract 69 Background: One of the challenges to addressing the growing burden of cancer in low- and middle-income countries is insufficient data and limitations in quality of cancer registries. The Botswana National Cancer Registry (BNCR), first established in 1999, is an IARC-endorsed population-based registry covering a population of 2.1 million. Here we assess BNCR's data quality over time. Methods: We conducted a retrospective review of BNCR data that was collected between January 1, 2005 and December 31, 2010. We assessed basis of cancer diagnosis, as well as key data quality indices (completeness, consistency, uniqueness, and accuracy) over two time periods: 2005–2007 and 2008–2010. We assessed cancer incidence and distribution during this time period, and reviewed Botswana Ministry of Health operational documents to identify major health care initiatives that may have had a bearing on cancer registry data quality. Results: In total, 8,938 cancer cases were registered 2005-2010. Kaposi sarcoma was the most commonly diagnosed cancer (n=1766, 19.4%), followed by cervical cancer (n=1252, 13.8%) and then breast cancer (n=801, 8.8%). During 2005-2007, 79% of all cancers were morphologically verified and 6% of were verified by death certificate alone. By 2008-2010, 89% of cancers were morphologically verified while none (0%) were verified by death certificate alone. There was a marked difference for basis of Kaposi sarcoma diagnosis (26% in 2005-2007, 43.8% 2008-2010), which changed from mainly clinical to pathology-based diagnosis. Factors that have contributed to this improvement include targeted initiatives such as clinician training, as well as broader health system developments such as general laboratory diagnostic capacitation that has facilitated use of histopathology services for cancer. Conclusion: BNCR data quality has improved over the years. These improvements enhance utility of cancer registry data for healthcare planning, and highlight the merit of cross-cutting health systems strengthening developments. This assessment, and the initiatives that have contributed to BNCR data improvement may be relevant to cancer registries in similar settings. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

Age-specific cancer survival in Estonia: recent trends and data quality.

BackgroundA number of population-based studies have demonstrated lower cancer survival in elderly patients than among middle-aged or younger patients. Also, data quality in cancer registries has been shown to be associated with age. The objective of this study was to examine the recent age-specific cancer survival trends and age-specific quality of cancer data in Estonia.MethodsUsing Estonian Cancer Registry data, we calculated relative survival ratios (RSRs) for eight common cancers in Estonia in 1995–1999 (cohort method) and 2005–2009 (period method) for four major age groups (15–54, 55–64, 65–74, and 75–84 years at diagnosis). The main data quality indicators were calculated, and the age-specific effect of missing death certificate initiated (DCI) cases on survival was estimated comparing 5-year RSRs computed from the complete data set with those from data set without DCI cases.ResultsWe observed overall rise in 5-year RSR for all eight cancers over the study period, with a considerable variation by age, with the lowest survival among the oldest patients. The widest age gradient in 5-year RSR was seen for bladder cancer (20% units in 2005–2009), followed by cancers of lung (16% units), kidney (15% units), breast and prostate (13% units), stomach and rectum (11% units), and colon (5% units). All data quality indicators, including proportion of cases with unknown stage showed a similar age-related pattern with the lowest quality in the oldest age group. The effect of missing DCI cases on survival estimates increased by age and was around 3% units for prostate and kidney cancers among the oldest patients.ConclusionYoung or middle-aged patients in Estonia experienced larger survival gain since the late 1990s than elderly patients. Decreasing quality of cancer registry data along with increasing patient age suggests less thorough clinical investigations in older age groups.

Data quality at the Bulgarian National Cancer Registry: An overview of comparability, completeness, validity and timeliness

Reporting of neoplasms in Bulgaria has been compulsory since a directive from the Ministry of Health in 1951. The quality of cancer registry data has been estimated rather infrequently in past years.We aimed to provide a comprehensive evaluation of the quality of the data at the Bulgarian National Cancer Registry (BNCR).Quantitative and semi-quantitative methods were applied for cancers diagnosed during the whole period 1993–2010, and also for cases diagnosed in 2006–2010. The methods used include historic data methods, mortality-to-incidence ratios (M:I), capture–recapture and death-certificate methods, proportions of morphologically verified cases (MV%), death-certificate-only cases (DCO%), and cases with missing information (primary site unknown, PSU%; stage unknown, SU%).The BNCR coding and classification systems follow international standards. The overall completeness was estimated at 92.6–94.7% for the period 2006–2010, with variations between cancer sites (86.7–98.5%). During the period 1993–2010, M:I decreased to 0.5 for males and 0.4 for females, MV increased to 87.4%, DCO and SU decreased to 4.8% and 18.8%, respectively, and PSU remained at the same level of about 4% for both sexes together. Sub-analysis revealed differences by site, sex and age groups. The comparison with other registries from the region showed similar incidence rates and directions of trends: M:I, MV% and DCO% that were not significantly different. The underreporting in 2008 and 2009 due to timely publication was estimated at an overall 0.8% and 0.5%, respectively.The present review showed that the BNCR yields internationally comparable data that are reasonably accurate, timely, and close to complete, especially in recent years. This is a prerequisite for the BNCR to expand its role to more areas of cancer control.

Incidence of Myelodysplastic Syndrome in Japan

BackgroundMyelodysplastic syndromes (MDS) are a diverse group of clonal hematopoietic stem cell malignancies that primarily affect the elderly. Although the incidence of MDS in western countries has been well investigated, little is known about the incidence in Asian populations.MethodsTo identify the incidence of MDS in Japan, we used population-based registry data from 1993 to 2008. The data represented 33.1% of the Japanese population. A total of 7995 patients were reported to the registry with newly diagnosed MDS during the study period.ResultsMedian age at diagnosis was 76 years. Incidence sharply increased with age, particularly in those aged over 70 years. The most recent crude incidence rate of MDS was 3.8 (95% CI 3.6–4.1) cases per 100 000 for men and 2.4 (95% CI 2.2–2.6) cases per 100 000 for women in 2008. Age-adjusted incidences of MDS in 2008, standardized by the world standard population, were 1.6 and 0.8 cases per 100 000 for men and women, respectively, while incidences standardized by the 1985 Japanese population were 2.5 and 1.2 cases per 100 000 for men and women, respectively.ConclusionsOur study reveals that some elderly patients suffer from MDS in Japan, but the incidence is lower than in Western countries. In current clinical practice, many elderly MDS patients are treated with supportive therapy based on an incomplete diagnosis, suggesting that the incidence estimated in this study might still be substantially underestimated. Accurate evaluation of the health impact of MDS requires evaluation of the mortality of the disease, continued surveillance, and improvement in the quality of cancer registry data.

Quality of cancer registry data: completeness of TNM staging and potential implications

Population-based cancer registries play a key role in cancer monitoring, and their utility relies heavily on the completeness and validity of the registered data. It is crucial to reduce incomplete stage information and to strengthen the role of TNM stage as key variables in the Danish Cancer Registry and other cancer registries. In this respect, distinction in cancer registries between evidence that staging was not performed clinically versus truly missing data would be an important next step. The present studies examined the completeness of the TNM staging data. In future studies it will be important to evaluate the accuracy as well.

Improving the Quality of Cancer Registry Data on Adult Haematopoietic Neoplasms: Impact of Engaging Clinicians.

Haematological malignancies (HM) accounts for 7% of all cancers in England (DoH, 2003). However, concerns have been expressed regarding the quality of information from cancer registries (DoH, 2000, Haward, 2003) which sheds doubt on the validity of the data. Several initiatives have been undertaken to improve the quality of data (Cartwright et al., 1990, 1997, Clough et al., 1996, Taylor et al., 1998, Maynadie et al., 1996, Ong et al., 1997). These initiatives have been restricted in the range of diagnoses or have operated independently of national cancer registries (Phekoo et al., 2002). No studies have assessed the impact of incidence on survival rates. We present results of a collaboration designed to improve the quality of data and assess the impact on incidence and survival.A consensus dataset and database of HM was developed between the Thames Cancer Registry (TCR) and clinicians between 1999 and 2000 in South Thames (adult population 5.4 million). Clinicians identified and confirmed the diagnosis of patients whilst diagnostic data were collected by a dedicated team of data collectors. Clinicians validated their cases bi-annually. Incidence and survival of the study population for the period 1999–2000 following the collaboration were compared with the same population over the period 1994–1996 prior to the collaboration and with a control population (North Thames area, adult population 5.5 million), where TCR collected data but without any clinical collaboration, for the period 1999–2000.Statistical analyses: the statistical significance of the standardized rate ratio (SRR) was evaluated using the method of Jensen et al., (1991). The Kaplan-Meier survival curves were compared using the log-rank test.For the period 1994–1996 there were no differences in the SRR or survival estimates in any disorders between North and South Thames. A 43% increase in incidence occurred between 1994–1996 and 1999–2000 in South Thames compared to only 5% in North Thames over the same periods, mainly for CLL, MDS, PV, PT, IMF, MGUS and WM. Table I shows a statistically significant difference in the SRR between the North and South Thames during the period 1999–2000 for five conditions: CLL, MDS, PV, PT and WM. Three year survival for patients diagnosed between 1999 and 2000 were higher in South Thames than North Thames in four conditions: CLL (71% vs. 49%, p = 0.001), CML (50% vs. 30%, p = 0.001), MDS (45% vs. 27%, p <0.001) and MM (39% vs. 28%, p <0.001). No significant difference in incidence or survival were seen for acute leukaemia, NHL or HD.Table 1: Comparison of the age standardized rate between 1994–1996 and 1999–2000 in patients aged 16–85+ years1994–19961999–2000North ThamesSouth ThamesComparisonNorth ThamesSouth ThamesComparisonSubtypesASRASRSRR (95% CI)ASRASRSRR (95% CI)CLL4.284.760.89 (0.89–1.07)3.786.580.57 (0.48–0.67)MDS2.332.151.08 (0.80–1.46)3.485.800.60 (0.50–0.71)PT0.690.910.75 (0.50–1.13)0.482.570.18 (0.13–0.26)PV1.051.060.99 (0.69–1.41)0.721.600.45 (0.31–0.63)WM0.370.371.00 ( 0– 0)0.330.980.33 (0.21–0.53)This study has shown that engaging clinicians have improved case ascertainment and that changes in incidence alone may affect outcome without significant differences in treatment. This study provides a benchmark of incidence and survival in the UK and a model for future collaborations.

Completeness and Validity of Cancer Registration in a Major Public Referral Hospital in Saudi Arabia

The 1994 Saudi National Cancer Registry (NCR), a population-based registry, showed a crude incidence rate (CIR) of 39/100,000 for all cancers in the Saudi population. The low CIR suggested possible under-reporting, especially during the early years of operation. This study as aimed at estimating the number of missed cases due to under-reporting, and to assess the validity of reported data from a major public referral hospital in Riyadh city. We compared cancer cases from the three data sources: medical records (MR), which were the original source of NCR cases; pathology reports (PR); and death certificates (DC). We estimated the missing cancer cases using the capture-recapture method with log-linear models of Fienberg to correct for interdependency between the three data sources. To assess the validity of the data, we reabstracted records of about 8% (39/4760 of previously reported cases from the same hospital. A total of 811 cancer cases were reported through the three sources, i.e., MR 611 (75.3%), PR 639 (78.8%) and DC 204 (25.2%). After fitting a series of log-linear models to the three sources of data, the three sources were found to be statistically dependent. Capture-repcapture method indicated that 384 cases were missed, giving an estimation of 1195 cancer cases to be reported. Using these 1195 estimated cases; the estimated ascertainment rates were 51% for medical records, 53% for pathology reports, 17% for death certificates, and 68% for the aggregated registry. In the validity assessment, major disagreement between the abstracted and reabstracted data was found to be highest for stage of disease (44%), followed by histology code and behavior (25.6%). Minor disagreements were most common for date of diagnosis (36%) and grade (36%). Overall, agreements were highest for laterality (95%), followed by primary site codes (90%) and basis of diagnosis (85%). Agreement of tumor description variables (site, histology, behavior, and stage) was 57%. Cancer registration will require substantial improvements in both completeness of reporting and data quality at the hospital level. Use of multiple data sources and estimation of missed cases will help ensure completeness of case registration.

Incompleteness and retrieval of case notes in a case note audit of colorectal cancer.

Hospital case notes are a crucial source of data but are subject to two major biases: incompleteness of data and non-retrieval. To assess these biases in relation to colorectal cancer a study was performed of all cases of colorectal cancer listed in the Thames cancer registry in patients resident in one of four districts in South Thames regions with a diagnosis in 1988. Five medical record sites were involved. Retrieval rate for all case notes for districts combined was 80%. In two districts the rates were too high for further investigation; in the other two respectively patient survival and whether treatment was given were positively associated with retrieval. Among the four districts incompleteness of notes ranged from 38% to 62% for staging, 8% to 40% for treatment, and 70% to 25% for diagnostic tests. Information about treatment was missing in 3% to 20%; survival data were omitted in less than 5%. In all districts completeness of case notes was inadequate and in some non-retrieval compounded the problem. Missing data reduce the quality of cancer registry data and potentially undermine interpretation of epidemiological studies and evaluation of care. Further research is warranted into the standards and resourcing of medical records departments and their effects on retrieval and data quality. Structured proformas could be applied across specialties to identify missing items in case notes, to identify areas where standards are required, or to audit notes where standards have already been agreed. A staging protocol to set standards for colorectal cancer has been adopted in one district, and a prospective audit is being established.