Dataset Information

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

ABSTRACT:

Background

Data 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.

Methods

As 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.

Results

Bias 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.

Conclusion

Our 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.

SUBMITTER: Andersson TM

PROVIDER: S-EPMC7921088 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Andersson Therese M-L TM Rutherford Mark J MJ Myklebust Tor Åge TÅ Møller Bjørn B Soerjomataram Isabelle I Arnold Melina M Bray Freddie F Parkin D Max DM Sasieni Peter P Bucher Oliver O De Prithwish P Engholm Gerda G Gavin Anna A Little Alana A Porter Geoff G Ramanakumar Agnihotram V AV Saint-Jacques Nathalie N Walsh Paul M PM Woods Ryan R RR Lambert Paul C PC

British journal of cancer 20201209 5

<h4>Background</h4>Data 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 diffe ...[more]

PMID: 33293692

Similar Datasets

Project description:BackgroundThe FeverApp registry uses ecological momentary assessment (EMA) to collect parental data on pediatric fever for scientific research. The mobile app FeverApp educates parents on safe fever management and serves as a fever diary.ObjectiveThe focus of this study was to evaluate the completeness and concordance of the EMA-based FeverApp registry with regard to its data quality from a multilevel perspective.MethodsStructured descriptions of fever episodes by health care professionals from an office were used as reference. The number of children, their sociodemographic data, and agreement of fever episodes, with maximum temperature, intake of antipyretics and antibiotics, and physician visits, were compared with the entries in the corresponding physician's reference records. The data quality indicators for completeness, meaning the extent to which the necessary data for the registry has actually been submitted, and concordance, which is the correspondence of the value of a data element with a reference source, were chosen to analyze whether EMA may be a suitable method for this kind of registry.ResultsIn both data sources, 1012 children were available for comparison over 16 months. The completeness of gender (1012/1012, 100%) and date of birth (1004/1012, 99.2%) information was high, and the mismatches were 0.69% (7/1012) and 1.19% (12/1012), respectively, between the sources. Of these 1012 children, 668 (66%) registered fever episodes in FeverApp. They relate to 534 families with 953 fever episodes in the reference records and 1452 episodes in the FeverApp registry. Of the 534 families, 183 (34.3%) refrained from visiting the office during fever episodes but nevertheless documented them in FeverApp. Largest part (766/1452, 52.75%) episodes were recorded exclusively in the FeverApp registry by 371 (371/534, 69.5%) families. The remaining 686 (47.2%) episodes of 391 (58.5%) children from 351 (65.7%) families were comparable with the reference data source in terms of physician visits, medication, and temperature. The completeness ranged, depending on the kind of variable, from 11.5% to 65% in the registry and from 7.6% to 42.6% in the office. The 953 fever episodes reported by the reference office consisted of 681 (71.5%) acute and 272 (28.5%) past episodes. In FeverApp, most past (262/272, 96.3%) but less acute (424/681, 62.3%) episodes have been entered. The concordance rates were varied: 90.2% for antibiotic use, 66.6% for antipyretic use, 61.7% for physician visits, and 16% for the highest temperature during the fever episode.ConclusionsBoth sources delivered only partial data, and the rates of completeness and concordance depended on the kind of variable. However, the FeverApp registry showed higher documentation and precision rates than professional records for all considered variables. Therefore, EMA may play a unique supplement for research in ambulatory care. FeverApp could support pediatric offices, especially during the pandemic.

Project description:BackgroundCancer is a major cause of death in children worldwide, and the recorded incidence tends to increase with time. Internationally comparable data on childhood cancer incidence in the past two decades are scarce. This study aimed to provide internationally comparable local data on the incidence of childhood cancer to promote research of causes and implementation of childhood cancer control.MethodsThis population-based registry study, devised by the International Agency for Research on Cancer in collaboration with the International Association of Cancer Registries, collected data on all malignancies and non-malignant neoplasms of the CNS diagnosed before age 20 years in populations covered by high-quality cancer registries with complete data for 2001-10. Incidence rates per million person-years for the 0-14 years and 0-19 years age groups were age-adjusted using the world standard population to provide age-standardised incidence rates (WSRs), using the age-specific incidence rates (ASR) for individual age groups (0-4 years, 5-9 years, 10-14 years, and 15-19 years). All rates were reported for 19 geographical areas or ethnicities by sex, age group, and cancer type. The regional WSRs for children aged 0-14 years were compared with comparable data obtained in the 1980s.FindingsOf 532 invited cancer registries, 153 registries from 62 countries, departments, and territories met quality standards, and contributed data for the entire decade of 2001-10. 385?509 incident cases in children aged 0-19 years occurring in 2·64 billion person-years were included. The overall WSR was 140·6 per million person-years in children aged 0-14 years (based on 284?649 cases), and the most common cancers were leukaemia (WSR 46·4), followed by CNS tumours (WSR 28·2), and lymphomas (WSR 15·2). In children aged 15-19 years (based on 100?860 cases), the ASR was 185·3 per million person-years, the most common being lymphomas (ASR 41·8) and the group of epithelial tumours and melanoma (ASR 39·5). Incidence varied considerably between and within the described regions, and by cancer type, sex, age, and racial and ethnic group. Since the 1980s, the global WSR of registered cancers in children aged 0-14 years has increased from 124·0 (95% CI 123·3-124·7) to 140·6 (140·1-141·1) per million person-years.InterpretationThis unique global source of childhood cancer incidence will be used for aetiological research and to inform public health policy, potentially contributing towards attaining several targets of the Sustainable Development Goals. The observed geographical, racial and ethnic, age, sex, and temporal variations require constant monitoring and research.FundingInternational Agency for Research on Cancer and the Union for International Cancer Control.

Dataset Information

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

Background

Methods

Results

Conclusion

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets