Evaluation of Completeness, Comparability, Validity, and Timeliness in Cancer Registries: A Scoping Review (original) (raw)
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Completeness and timeliness: Cancer registries could/should improve their performance
European Journal of Cancer, 2015
The mission of a cancer registry is to provide complete and reliable incidence data with a short delay. Methods for monitoring completeness and timeliness are available to registries ranging from less to more complex. We wanted to know which methods are currently in use among cancer registries and to compare results with those obtained in a previous survey conducted in year 2006. Methods We launched a new survey with questions on type of registry, completeness methods used and time and type of result dissemination. We sent the questionnaire to all general (GCR) and specialised (SCR) registries active in Europe, including the 27 countries of the European Union, the candidate members, Norway and Switzerland, from the list made available by the European Network of Cancer registries (ENCR). Results With a response rate of 65.8% among GCR and 58.3% among SCR, we obtained 116 registries (population covered: 280 millions) available for analysis. The most common methods used were trends comparison (79%), and mortality-incidence ratio (above 60%). More complex methods resulted less used: capture-recapture (30%), the flow method (18%), and MIAMOD/PIAMOD (14%). Median time for completing the incidence was 18 months, but with wide variation. Result dissemination delay was shorter, although more than one third (36.3%) declared to not publish their results on own, but only contributing to larger national or international data repositories and publications. Conclusions Cancer registries should further improve the practice of measuring their completeness and should shift from traditional to more modern quantitative methods. Words: 246
Indicators of Data Quality at the Cancer Registry Zurich and Zug in Switzerland
BioMed research international, 2018
Data quality is an important issue in cancer registration. This paper provides a comprehensive overview of the four main data quality indicators (comparability, validity, timeliness, and completeness) for the Cancer Registry Zurich and Zug (Switzerland). We extracted all malignant cancer cases (excluding non-melanoma skin cancer) diagnosed between 1980 and 2014 in the canton of Zurich. Methods included the proportion of morphologically verified cases (MV%), the proportion of DCN and DCO cases (2009-2014), cases with primary site uncertain (PSU%), the stability of incidence rates over time, age-specific incidence rates for childhood cancer, and mortality:incidence (MI) ratios. The DCO rate decreased from 6.4% in 1997 to 0.8% in 2014 and was <5% since 2000. MV% was 95.5% in 2014. PSU% was <3% over the whole period. The incidence rate of all tumours increased over time with site-specific fluctuations. The overall M:I ratio decreased from 0.58 in 1980 to 0.37 in 2014. Overall, dat...
A new method to evaluate the completeness of case ascertainment by a cancer registry
Cancer Causes & Control, 2008
Background Epidemiologic research into cancer and subsequent decision making to reduce the cancer burden in the population are dependent on the quality of available data. The more reliable the data, the more confident we can be that the decisions made would have the desired effect in the population. The North American Association of Central Cancer Registries (NAACCR) certifies population-based cancer registries, ensuring uniformity of data quality. An important assessment of registry quality is provided by the index of completeness of cancer case ascertainment. NAACCR currently computes this index assuming that the ratio of cancer incidence rates to cancer mortality rates is constant across geographic areas within cancer site, gender, and race groups. NAACCR does not incorporate the variability of this index into the certification process. Methods We propose an improved method for calculating this index based on a statistical model developed at the National Cancer Institute to predict expected incidence using demographic and lifestyle data. We calculate the variance of our index using statistical approximation. Results We use the incidence model to predict the number of new incident cases in each registry area, based on all available registry data. Then we adjust the registry-specific expected numbers for reporting delay and data corrections. The proposed completeness index is the ratio of the observed number to the adjusted prediction for each registry. We calculate the variance of the new index and propose a simple method of incorporating this variability into the certification process. Conclusions Better modeling reduces the number of registries with unrealistically high completeness indices. We provide a fuller picture of registry performance by incorporating variability into the certification process.
Data quality at the Icelandic Cancer Registry: Comparability, validity, timeliness and completeness
Acta Oncologica, 2012
Introduction. The nationwide Icelandic Cancer Registry (ICR) was established in 1954 and has been extensively used for research from the outset although formal quality assessment of the registry database has not previously been undertaken. In this paper we report the fi rst formal evaluation of the comparability, validity, timeliness and completeness of the ICR. Material and methods. Data from the ICR for the period 1955-2009 (41 994 cancer diagnoses) were used, applying established quantitative and semi-quantitative methods. In order to evaluate the completeness of the ICR, record linkage was performed between the ICR and the population-based Hospital Discharge Registry to identify potential missing cases for tumour diagnoses in 2000 and 2001. Results. The registration is in accordance with internationally accepted standards. It has high validity, but random variation in rates is prominent in this small population. Record linkage with the Hospital Discharge Registry revealed that in addition to the 2459 cancers registered in 2000-2001, 21 cases were missing, indicating 99.15% completeness. Tumours of the central nervous system constituted 71%, and haematological malignancies 19% of these missing entries. Discussion. The ICR has high completeness, validity and timeliness and is comparable to the cancer registries of the other Nordic Countries. As cancer registries have many important roles, it is of great importance that their data are at all times as complete and valid as possible. Thus the ICR aims to constantly improve and update the data gathering process.
European Journal of Cancer, 2009
Neoplasms Comparability Completeness Validity Accuracy Timeliness A B S T R A C T Aim: To provide a comprehensive evaluation of the quality of the data collected on both solid and non-solid tumours at the Cancer Registry of Norway (CRN). Methods: Established quantitative and semi-quantitative methods were used to assess comparability, completeness, accuracy and timeliness of data for the period 1953-2005, with special attention to the registration period 2001-2005. Results: The CRN coding and classification system by and large follows international standards, with some further subdivisions of morphology groupings performed in-house. The overall completeness was estimated at 98.8% for the registration period 2001-2005. There remains a variable degree of under-reporting particularly for haematological malignancies (C90-95) and tumours of the central nervous system (C70-72). For the same period, 93.8% of the cases were morphologically verified (site-specific range: 60.0-99.8%). The under-reporting in 2005 due to timely publication is estimated at 2.2% overall, based on the number of cases received at the registry during the following year.
Academic Hospital Journal, 2024
Background: Cancer is a major burden of disease worldwide, including in Indonesia. As an effort to control the burden of cancer, WHO established National Cancer Control Programs (NCCP) where cancer registration is one of the key points. Dharmais Cancer Center Hospital, appointed as the national cancer center, has the responsibility to conduct a cancer registry in Indonesia. The good quality data of cancer registry according to international standards is beneficial to describe the cancer burden in the country. In Dharmais Cancer Center Hospital, microscopic verification is one of the variables that has not been qualified. Therefore, it is important to evaluate the completeness of cancer data variables toward data cancer quality on hospital-based cancer registry of Dharmais Cancer Center Hospital. To assess the quality of cancer data based on microscopic verification, to evaluate the completeness of hospital-based cancer registry variables and the quality of data based on microscopic verification between complete and incomplete variable groups. Materials and Methods: This quantitative research is an observational study (non-experimental) with crosssectional study design. It utilizes secondary data from hospital-based cancer registry of Dharmais Cancer Center Hospital for incidence year 2013-2017. Results: Data quality of microscopic verification that assessed on a complete data group is 87,8% and for overall cancer cases is 62%. Among social variables, identity numbers are the most incomplete variable, which is 39%. While among tumor data variables, stage is also the most incomplete variable with 82% data. There are differences between the quality of data based on microscopic verification with the completeness of data, especially among social data variables and tumor data variables. Conclusion: The quality data based on microscopic verification that is assessed on a complete variable group is better than microscopic verification on overall cancer cases. The incomplete variables among social variables are identity number, date of birth, address, and district/province. Whereas on tumor variables, the incomplete variables are stage, treatment, metastasis, and laterality. The completeness of cancer data has an important role on data quality based on microscopic verification mainly on social and tumor variables. Improvement and strengthening particularly on management and technical aspects of cancer registration are indispensable.
Frontiers in Oncology, 2023
The aim of this study was to compare the functional characteristics of two computer-based systems for quality control of cancer registry data through analysis of their output differences. Methods: The study used cancer incidence data from 22 of the 49 registries of the Italian Network of Cancer Registries registered between 1986 and 2017. Two different data checking systems developed by the WHO International Agency for Research on Cancer (IARC) and the Joint Research Center (JRC) with the European Network of Cancer Registries (ENCR) and routinely used by registrars were used to check the quality of the data. The outputs generated by the two systems on the same dataset of each registry were analyzed and compared. Results: The study included a total of 1,305,689 cancer cases. The overall quality of the dataset was high, with 86% (81.7-94.1) microscopically verified cases and only 1.3% (0.03-3.06) cases with a diagnosis by death certificate only. The two check systems identified a low percentage of errors (JRC-ENCR 0.17% and IARC 0.003%) and about the same proportion of warnings (JRC-ENCR 2.79% and IARC 2.42%) in the dataset. Forty-two cases (2% of errors) and 7067 cases (11.5% of warnings) were identified by both systems in equivalent categories. 11.7% of warnings related to TNM staging were identified by the JRC-ENCR system only. The IARC system identified mainly incorrect combination of tumor grade and morphology (72.5% of warnings).
Development of a tool for comprehensive evaluation of population-based cancer registries
International Journal of Medical Informatics, 2018
Several methods have been suggested for evaluation of population-based cancer registries (PBCR) worldwide. However, most of these methods evaluate the data and outputs of the cancer registries. This study aimed to develop a comprehensive tool and protocol for evaluation of inputs, processes and outputs of a PBCR. Methods: The standards of the North American Association of Central Cancer Registries (NAACCR) were used to draft a comprehensive checklist. In addition, the national guidelines of PBCR were used to develop a questionnaire for evaluation of knowledge and practice of the PBCR personnel. Furthermore, a protocol for evaluation of the completeness and validity of the PBCR data was developed according to the International Agency for Research on Cancer (IARC) and the NAACCR guidelines. A 0-4 Likert based score and expert opinions (10 experts) were used to assess validity of the eight questionnaires/checklists. A modified Delphi method was applied to validate the checklists and questionnaires. Questions with a score higher than 3 remained in the final tools. Results: The final package consists of 546 questions including 108 (19.8%) for evaluation of guidelines, 54 (9.9%) for analysis and reports, 87 (15.9%) for governance and infrastructure, 155 (28.4%) for information technology, 21 (3.8%) for personnel knowledge and 121 (22.2%) for their practice. Additionally, data quality indicators were also considered for evaluation of PBCRs. Conclusion: This comprehensive tool can be used to show the gaps and limitations of the PBCR programs and provide informative clues for their improvement.