Geographical and temporal differences in gastric and oesophageal cancer registration by subsite and morphology in Europe.

Background: Gastric and oesophageal cancers pose a serious public health concern. In 2020 a total of 189,031 incident cases (136,038 stomach, 52,993 oesophagus) and 142,508 deaths (96,997 stomach, 45,511 oesophagus) were estimated in Europe. Oesophago-gastric cancers are a heterogeneous disease, with different aetiology and epidemiology for the various topographic subsites and main histopathological types. Topography subsite and morphology is key information to allow differentiating oesophago-gastric cancers. Correct registration and coding of such variables are fundamental in allowing proper description of the epidemiology of different subsites and histopathological types of oesophago-gastric cancers. The aim of this article is to highlight geographical and temporal variability in topography and morphology of oesophago-gastric cancers observed in Europe in the considered period. Methods: Data collected in the framework of the ENCR-JRC (European Commission's Joint Research Centre) data call and feeding the European Cancer Information System (ECIS) were used to assess the variability of topography and morphology registration of gastric and oesophageal cancer in Europe in the period 1995-2014. Malignant cancers of the stomach and the oesophagus were selected following, respectively, topography codes C16 and C15 of the International Classification of Diseases for Oncology, third edition (ICD-O-3). Analyses were performed by subsite, morphology group, year, sex, and European region. Results: A total of 840,464 incident cases occurring in the period 1995-2014 - 579,264 gastric (67.2%) and 276,260 (32.8%) oesophageal carcinomas - was selected for the analysis. Data was recorded by 53 PBCRs (9 based in Northern Europe, 14 in Western Europe, 3 in Eastern Europe and 27 in Southern Europe) from 19 countries. Conclusion: A wide variability in oesophago-gastric cancers topographic subsites and histopathological types patterns was observed, with a corresponding improvement in accuracy of registration in the analysis period. PBCRs are ideally placed to guide the epidemiological evaluations of such a complex group of diseases, in collaboration with clinicians, patients and other public health stakeholders.

Global Stage Distribution of Breast Cancer at Diagnosis: A Systematic Review and Meta-Analysis.

Importance: Stage at diagnosis is a key prognostic factor for cancer survival. Objective: To assess the global distribution of breast cancer stage by country, age group, calendar period, and socioeconomic status using population-based data. Data Sources: A systematic search of MEDLINE and Web of Science databases and registry websites and gray literature was conducted for articles or reports published between January 1, 2000, and June 20, 2022. Study Selection: Reports on stage at diagnosis for individuals with primary breast cancer (C50) from a population-based cancer registry were included. Data Extraction and Synthesis: Study characteristics and results of eligible studies were independently extracted by 2 pairs of reviewers (J.D.B.F., A.D.A., A.M., R.S., and F.G.). Stage-specific proportions were extracted and cancer registry data quality and risk of bias were assessed. National pooled estimates were calculated for subnational or annual data sets using a hierarchical rule of the most relevant and high-quality data to avoid duplicates. Main Outcomes and Measures: The proportion of women with breast cancer by (TNM Classification of Malignant Tumors or the Surveillance, Epidemiology, and End Results Program [SEER]) stage group. Results: Data were available for 2.4 million women with breast cancer from 81 countries. Globally, the proportion of cases with distant metastatic breast cancer at diagnosis was high in sub-Saharan Africa, ranging from 5.6% to 30.6% and low in North America ranging from 0.0% to 6.0%. The proportion of patients diagnosed with distant metastatic disease decreased over the past 2 decades from around 3.8% to 35.8% (early 2000s) to 3.2% to 11.6% (2015 onwards), yet stabilization or slight increases were also observed. Older age and lower socioeconomic status had the largest proportion of cases diagnosed with distant metastatic stage ranging from 2.0% to 15.7% among the younger to 4.1% to 33.9% among the oldest age group, and from 1.7% to 8.3% in the least disadvantaged groups to 2.8% to 11.4% in the most disadvantaged groups. Conclusions and Relevance: Effective policy and interventions have resulted in decreased proportions of women diagnosed with metastatic breast cancer at diagnosis in high-income countries, yet inequality persists, which needs to be addressed through increased awareness of breast cancer symptoms and early detection. Improving global coverage and quality of population-based cancer registries, including the collection of standardized stage data, is key to monitoring progress.

Ontology-Based AI Design Patterns and Constraints in Cancer Registry Data Validation.

Data validation in cancer registration is a critical operation but is resource-intensive and has traditionally depended on proprietary software. Ontology-based AI is a novel approach utilising machine reasoning based on axioms formally described in description logic. This is a different approach from deep learning AI techniques but not exclusive of them. The advantage of the ontology approach lies in its ability to address a number of challenges concurrently. The disadvantages relate to computational costs, which increase with language expressivity and the size of data sets, and class containment restrictions imposed by description logics. Both these aspects would benefit from the availability of design patterns, which is the motivation behind this study. We modelled the European cancer registry data validation rules in description logic using a number of design patterns and showed the viability of the approach. Reasoning speeds are a limiting factor for large cancer registry data sets comprising many hundreds of thousands of records, but these can be offset to a certain extent by developing the ontology in a modular way. Data validation is also a highly parallelisable process. Important potential future work in this domain would be to identify and optimise reusable design patterns, paying particular attention to avoiding any unintended reasoning efficiency hotspots.

The Joint Research Centre-European Network of Cancer Registries Quality Check Software (JRC-ENCR QCS).

The core activity of population-based cancer registries (PBCRs) is to gather information from all new cancer cases in a defined geographic area, in order to measure the magnitude of cancer burden and to provide a basis for cancer research. The Joint Research Centre-European Network of Cancer Registries Quality Check Software (JRC-ENCR QCS) is a Java standalone desktop application, under development since 2015, created to support PBCRs in the validation of the collected data. The JRC-ENCR QCS performs internal consistency checks on the cancer registry dataset, to detect impossible or unlikely codes or combination of codes, and is thereby an important tool to support the validation efforts by registries and improve data quality and European-wide harmonisation. The software package also includes the JRC CSV Data layout converter, a complementary tool for transforming PBCR incidence files into a format compatible with the JRC-ENCR QCS. This paper gives an overview of the JRC-ENCR QCS, describing the role of the software in processing data files submitted by PBCRs contributing to the European Cancer Information System (ECIS) as well as its functionalities. The development of the JRC-ENCR QCS is an evolving process, with regular updates implementing new and revised European and International recommendations and classifications.

Stage shift and relative survival for head and neck cancer during the 2020 COVID-19 pandemic: a population-based study of temporal trends.

Objective: During the first wave of the COVID-19 pandemic in 2020, non-essential health services were suspended in Belgium, and the public was ordered to socially isolate. Underdiagnosis of cancer during this period was reported worldwide. Certain risk factors for head and neck cancer (HNC) overlap with those for COVID-19 incidence and mortality, making underdiagnosis and subsequent stage shift of this potentially rapidly progressing cancer a major concern. We aimed to analyze incidence, clinical stage at presentation, and survival of patients diagnosed with HNC in 2020 in Belgium, considering recent temporal trends. Methods: Using population-based data from the Belgian Cancer Registry (BCR), we extrapolated 2017-2019 trends in incidence, clinical stage, and 1-year relative survival (1yRS) of HNC to create an expected value for 2020 and compared this to the observed value. Results: There were 9.5% fewer HNCs diagnosed in 2020, compared to the predicted incidence. Underdiagnosis was larger for males (-11.8%), patients aged 50-64 (-11.2%) and 65-79 (-11.1%), and for oral cavity cancer (-17.6%). Shifts to more advanced stages were observed in larynx and oropharynx tumors and for (male) patients aged 80+. A 2.4 percentage point decline in 1yRS was observed, relative to the increasing trends in 1yRS (2017-2019). Conclusion: The COVID-19 pandemic led to underdiagnosis of HNC, resulting in shifts to more advanced stage at presentation in certain subgroups. A stage shift can be expected for the 9.5% of tumors not yet diagnosed at the end of 2020. HNC patients diagnosed in 2020 suffered higher than expected mortality.

An ontology design for validating childhood cancer registry data.

Ontologies can provide a valuable role in the work of cancer registration, particularly as a tool for managing and navigating the various classification systems and coding rules. Further advantages accrue from the ability to formalise the coding rule base using description logics and thereby benefit from the associated automatic reasoning functionality. Drawing from earlier work that showed the viability of applying ontologies in the data validation tasks of cancer registries, an ontology was created using a modular approach to handle the specific checks for childhood cancers. The ontology was able to handle successfully the various inter-variable checks using the axiomatic constructs of the web ontology language. Application of an ontological approach for data validation can greatly simplify the maintenance of the coding rules and facilitate the federation of any centralised validation process to the local level. It also provides an improved means of visualising the rule interdependencies from different perspectives. Performance of the automatic reasoning process can be a limiting issue for very large datasets and will be a focus for future work. Results are provided showing how the ontology is able to validate cancer case records typical for childhood tumours.

Quality indicators: completeness, validity and timeliness of cancer registry data contributing to the European Cancer Information System.

Population-based Cancer Registries (PBCRs) are tasked with collecting high-quality data, important for monitoring cancer burden and its trends, planning and evaluating cancer control activities, clinical and epidemiological research and development of health policies. The main indicators to measure data quality are validity, completeness, comparability and timeliness. The aim of this article is to evaluate the quality of PBCRs data collected in the first ENCR-JRC data call, dated 2015. Methods: All malignant tumours, except skin non-melanoma, and in situ and uncertain behaviour of bladder were obtained from 130 European general PBCRs for patients older than 19 years. Proportion of cases with death certificate only (DCO%), proportion of cases with unknown primary site (PSU%), proportion of microscopically verified cases (MV%), mortality to incidence (M:I) ratio, proportion of cases with unspecified morphology (UM%) and the median of the difference between the registration date and the incidence date were computed by sex, age group, cancer site, period and PBCR. Results: A total of 28,776,562 cases from 130 PBCRs, operating in 30 European countries were included in the analysis. The quality of incidence data reported by PBCRs has been improving across the study period. Data quality is worse for the oldest age groups and for cancer sites with poor survival. No differences were found between males and females. High variability in data quality was detected across European PBCRs. Conclusion: the results reported in this paper are to be interpreted as the baseline for monitoring PBCRs data quality indicators in Europe along time.

Work and education interruption in long-term Hodgkin lymphoma survivors: an analysis among patients from nine EORTC-LYSA trials.

BACKGROUND: Disease-specific studies on the impact of Hodgkin lymphoma (HL) on education or work interruption and resumption are lacking. MATERIAL AND METHODS: In a cross-sectional study conducted among long-term HL survivors enrolled from 1964 to 2004 in nine randomised EORTC-LYSA trials, the interruption and resumption of education/work was investigated. Survivors alive 5-44 years after diagnosis who were studying or working at time of diagnosis were included (n = 1646). Patient and treatment characteristics were obtained from trial records. Education and work outcomes were collected using the Life Situation Questionnaire. Logistic regression was used to model education or work interruption; Cox regression was used to study resumption rates. RESULTS: Among survivors studying at time of diagnosis (n = 323), 52% (95% CI: 46-57%) interrupted their education; however, it was resumed within 24 months by 92% (95% CI: 87-96%). The probability of interruption decreased with time: the more recent the treatment era, the lower the risk (OR 0.70 per 10 years, 95% CI: 0.49-1.01). Treatment with radiotherapy (yes vs. no) was associated with a higher education resumption rate (HR 2.01, 95% CI 1.07-3.78) whereas age, sex, stage, radiotherapy field and chemotherapy were not.Among survivors working at time of diagnosis (n = 1323), 77% (95% CI: 75-79%) interrupted their work. However, it was resumed within 24 months by 86% (95% CI: 84%-88%). Women were more likely to interrupt their work as compared to men (OR 1.90, 95% CI: 1.44-2.51) and, when interrupted, less likely to resume work (HR 0.70, 95% CI: 0.61-0.80). Survivors with a higher educational level were less likely to interrupt their work (OR 0.68 for university vs. no high school, 95% CI: 0.46-1.03); and when interrupted, more likely to resume work (HR 1.50 for university vs. no high school, 95% CI: 1.21-1.86). Increasing age was also associated with lower resumption rates (HR 0.62 for age ≥50 vs. 18-29 years, 95% CI: 0.41-0.94). CONCLUSION: An interruption in education/work was common among long-term HL survivors. However, most of the survivors who interrupted their studies or work had resumed their activities within 24 months. In this study, no associations between survivors' characteristics and failure to resume education were observed. Female sex, age ≥50 years, and a lower level of education were found to be associated with not resuming work after treatment for HL.

Cancer treatment data available in European cancer registries: Where are we and where are we going?

Population-based cancer registries are responsible for collecting incidence and survival data on all reportable neoplasms within a defined geographical area. During the last decades, the role of cancer registries has evolved beyond monitoring epidemiological indicators, as they are expanding their activities to studies on cancer aetiology, prevention, and quality of care. This expansion relies also on the collection of additional clinical data, such as stage at diagnosis and cancer treatment. While the collection of data on stage, according to international reference classification, is consolidated almost everywhere, data collection on treatment is still very heterogeneous in Europe. This article combines data from a literature review and conference proceedings together with data from 125 European cancer registries contributing to the 2015 ENCR-JRC data call to provide an overview of the status of using and reporting treatment data in population-based cancer registries. The literature review shows that there is an increase in published data on cancer treatment by population-based cancer registries over the years. In addition, the review indicates that treatment data are most often collected for breast cancer, the most frequent cancer in women in Europe, followed by colorectal, prostate and lung cancers, which are also more common. Treatment data are increasingly being reported by cancer registries, though further improvements are required to ensure their complete and harmonised collection. Sufficient financial and human resources are needed to collect and analyse treatment data. Clear registration guidelines are to be made available to increase the availability of real-world treatment data in a harmonised way across Europe.

2022 revised European recommendations for the coding of the basis of diagnosis of cancer cases in population-based cancer registries.

The basis of diagnosis recommendations for population-based cancer registries aim to provide a standardized coding tool that reflects the certainty of cancer diagnosis, especially when pathological confirmation is lacking. The proportion of clinical diagnoses serves as an indicator of data quality. Given the evolving nature of diagnostic techniques, regular revision of the basis of diagnosis rules is crucial. To address this, a working group comprising representatives from the steering committee and member registries of the European Network of Cancer Registries was established. The original 1999 recommendations were comprehensively reviewed, resulting in the publication of an updated version. These new recommendations came into effect for incident cancer cases starting from January 1, 2023. The updated recommendations comprise an adapted code list for the basis of diagnosis, optional codes for histology cases, revisions related to flow cytometry, liquid biopsy, and cytogenetic/molecular testing, consolidation of histology codes 6 and 7, introduction of a new code 8 for cytogenetic/molecular confirmation, and establishment of new criteria for registering specific morphology codes in cancers lacking pathological confirmation.

Employment situation among long-term Hodgkin lymphoma survivors in Europe: an analysis of patients from nine consecutive EORTC-LYSA trials.

PURPOSE: Little is known about the employment situation of long-term Hodgkin lymphoma (HL) survivors despite their young age at diagnosis and the favorable prognosis of the disease. In this cross-sectional study, we aim to describe the employment situation in a cohort of long-term HL survivors compared to the general population and investigate the associations with disease characteristics and treatment exposure. METHODS: HL survivors > 25 years (n = 1961) were matched 1:25 to controls (n = 49,025) from the European Union Labour Force Survey. Individual treatment information was obtained from trial records. Employment and socio-demographic characteristics were collected using the Life Situation Questionnaire. Logistic regression models were used to estimate associations between disease and treatment characteristics with employment status and work-related attitudes. RESULTS: At employment assessment, 69.7% of survivors (95% CI: 67.6-71.7%) were working; of these, 68.9% (95% CI: 66.3-71.3%) worked full-time, a figure comparable to that of controls (p value 0.17). The risk of not working was associated with increasing age at diagnosis, increasing age at survey, female sex, lower educational level, and relapse history. Of those who were at work during treatment, 16.8% (95% CI: 14.5-19.3%) stated their income had subsequently decreased, which was attributed to their HL by 65.4% (95% CI: 57.5-72.8). Among those not at work, 25.1% (95% CI: 20.7-29.8) survivors were disabled compared to only 14.5% (95% CI: 13.8-15.3%) of controls. CONCLUSIONS: In this cohort of HL survivors, employment status was comparable to that of the general population. However, increasing age at follow-up, female sex, lower educational level, and relapse history are risk factors for unemployment, a perceived decrease in income, and disability. IMPLICATIONS FOR CANCER SURVIVORS: To further improve follow-up care, special attention should be paid to these vulnerable subgroups.

A multipurpose TNM stage ontology for cancer registries.

BACKGROUND: Population-based cancer registries are a critical reference source for the surveillance and control of cancer. Cancer registries work extensively with the internationally recognised TNM classification system used to stage solid tumours, but the system is complex and compounded by the different TNM editions in concurrent use. TNM ontologies exist but the design requirements are different for the needs of the clinical and cancer-registry domains. Two TNM ontologies developed specifically for cancer registries were designed for different purposes and have limitations for serving wider application. A unified ontology is proposed to serve the various cancer registry TNM-related tasks and reduce the multiplication effects of different ontologies serving specific tasks. The ontology is comprehensive of the rules for TNM edition 7 as required by cancer registries and designed on a modular basis to allow extension to other TNM editions. RESULTS: A unified ontology was developed building on the experience and design of the existing ontologies. It follows a modular approach allowing plug in of components dependent upon any particular TNM edition. A Java front-end was developed to interface with the ontology via the Web Ontology Language application programme interface and enables batch validation or classification of cancer registry records. The programme also allows the means of automated error correction in some instances. Initial tests verified the design concept by correctly inferring TNM stage and successfully handling the TNM-related validation checks on a number of cancer case records, with a performance similar to that of an existing ontology dedicated to the task. CONCLUSIONS: The unified ontology provides a multi-purpose tool for TNM-related tasks in a cancer registry and is scalable for different editions of TNM. It offers a convenient way of quickly checking validity of cancer case stage information and for batch processing of multi-record data via a dedicated front-end programme. The ontology is adaptable to many uses, either as a standalone TNM module or as a component in applications of wider focus. It provides a first step towards a single, unified TNM ontology for cancer registries.

Impact of the first wave of the COVID-19 pandemic on cancer registration and cancer care: a European survey.

BACKGROUND: The coronavirus disease COVID-19 pandemic posed a number of challenges to the oncology community, particularly the diagnosis and care of cancer patients while ensuring safety from the virus for both patients and professionals: minimization of visits to the hospital, cancellation of the screening programmes and the difficulties in the management and operation of cancer registries (CRs) while working remotely. This article describes the effects in the medium term of the first wave of the COVID-19 pandemic on cancer registration in Europe, focusing on changes in cancer detection and treatment, possible reduction of CR resources and difficulties in the access to data sources. METHODS: A questionnaire was distributed in June 2020 to the directors of 108 CRs from 34 countries affiliated to the European Network of Cancer Registries, providing a 37% response rate. RESULTS: The results of the survey showed that cancer-screening programmes were mostly stopped or slowed down in the majority of regions covered by the respondent CRs. Cancer diagnostics and treatments were severely disrupted. The cancer registration process was also disrupted, due to changes in the work modalities for the personnel, as well as to the difficulties in accessing sources and/or receiving the notifications. In some CRs, staff was allocated to different activities related to controlling the pandemic. Several CRs reported that they were investigating the impact of COVID-19 on cancer care via dedicated studies. CONCLUSIONS: A careful analysis will be necessary for proper interpretation of temporal and geographical variations of the 2020 cancer burden indicators.

The European cancer burden in 2020: Incidence and mortality estimates for 40 countries and 25 major cancers.

INTRODUCTION: Europe is an important focus for compiling accurate and up-to-date world cancer statistics owing to its large share of the world's total cancer burden. This article presents incidence and mortality estimates for 25 major cancers across 40 individual countries within European areas and the European Union (EU-27) for the year 2020. METHODS: The estimated national incidence and mortality rates are based on statistical methodology previously applied and verified using the most recently collected incidence data from 151 population-based cancer registries, mortality data and 2020 population estimates. RESULTS: Estimates reveal 4 million new cases of cancer (excluding non-melanoma skin cancer) and 1.9 million cancer-related deaths. The most common cancers are: breast in women (530,000 cases), colorectum (520,000), lung (480,000) and prostate (470,000). These four cancers account for half the overall cancer burden in Europe. The most common causes of cancer deaths are: lung (380,000), colorectal (250,000), breast (140,000) and pancreatic (130,000) cancers. In EU-27, the estimated new cancer cases are approximately 1.4 million in males and 1.2 million in females, with over 710,000 estimated cancer deaths in males and 560,000 in females. CONCLUSION: The 2020 estimates provide a basis for establishing priorities in cancer-control measures across Europe. The long-established role of cancer registries in cancer surveillance and the evaluation of cancer control measures remain fundamental in formulating and adapting national cancer plans and pan-European health policies. Given the estimates are built on recorded data prior to the onset of coronavirus disease 2019 (COVID-19), they do not take into account the impact of the pandemic.

A direct method for the identification of patterns of care using administrative databases: the case of breast cancer.

OBJECTIVES: To identify and provide lists of procedures and drugs related to diagnosis and treatment of breast cancer. These lists can be used for the estimation of the cost of illness. METHODS: The method consists of identifying lists of procedures/interventions/drugs related to the tumour of interest, drawn by a panel of expert clinicians and oncologists on the basis of clinical guidelines and current practice. The lists are applied to data referring to breast cancer female patients, collected by population-based Cancer Registries and linked at individual level with information on health care treatments. A comparison with lists obtained via the matched control method is implemented. RESULTS: The distribution of administered procedures and drug prescriptions is coherent with the patient clinical pathway: surgery is the main cause of hospitalization in the first year since diagnosis, diagnostic and monitoring interventions are more frequent in the following years (recurrences detection), and at end-of-life (palliative care). Most outpatient services are due to diagnosis and monitoring, one third of services in the first year since diagnosis is radiotherapy and chemotherapy. Drugs prescribed to patients and sold in pharmacy include hormonal drugs as first course treatment and analgesics as palliative care. CONCLUSIONS: This direct method represents a valid alternative to the matched control method in describing patterns of care and costs related to the entire disease pathway. It is particularly suitable in case of cancer sites with complex patterns of care, such as breast cancer. The lists of codes developed here are based on international classification systems and can be easily applicable to other countries.

An ontology-based approach for developing a harmonised data-validation tool for European cancer registration.

BACKGROUND: Population-based cancer registries constitute an important information source in cancer epidemiology. Studies collating and comparing data across regional and national boundaries have proved important for deploying and evaluating effective cancer-control strategies. A critical aspect in correctly comparing cancer indicators across regional and national boundaries lies in ensuring a good and harmonised level of data quality, which is a primary motivator for a centralised collection of pseudonymised data. The recent introduction of the European Union's general data-protection regulation (GDPR) imposes stricter conditions on the collection, processing, and sharing of personal data. It also considers pseudonymised data as personal data. The new regulation motivates the need to find solutions that allow a continuation of the smooth processes leading to harmonised European cancer-registry data. One element in this regard would be the availability of a data-validation software tool based on a formalised depiction of the harmonised data-validation rules, allowing an eventual devolution of the data-validation process to the local level. RESULTS: A semantic data model was derived from the data-validation rules for harmonising cancer-data variables at European level. The data model was encapsulated in an ontology developed using the Web-Ontology Language (OWL) with the data-model entities forming the main OWL classes. The data-validation rules were added as axioms in the ontology. The reasoning function of the resulting ontology demonstrated its ability to trap registry-coding errors and in some instances to be able to correct errors. CONCLUSIONS: Describing the European cancer-registry core data set in terms of an OWL ontology affords a tool based on a formalised set of axioms for validating a cancer-registry's data set according to harmonised, supra-national rules. The fact that the data checks are inherently linked to the data model would lead to less maintenance overheads and also allow automatic versioning synchronisation, important for distributed data-quality checking processes.

Cancer cure for 32 cancer types: results from the EUROCARE-5 study.

BACKGROUND: Few studies have estimated the probability of being cured for cancer patients. This study aims to estimate population-based indicators of cancer cure in Europe by type, sex, age and period. METHODS: 7.2 million cancer patients (42 population-based cancer registries in 17 European countries) diagnosed at ages 15-74 years in 1990-2007 with follow-up to 2008 were selected from the EUROCARE-5 dataset. Mixture-cure models were used to estimate: (i) life expectancy of fatal cases (LEF); (ii) cure fraction (CF) as proportion of patients with same death rates as the general population; (iii) time to cure (TTC) as time to reach 5-year conditional relative survival (CRS) >95%. RESULTS: LEF ranged from 10 years for chronic lymphocytic leukaemia patients to <6 months for those with liver, pancreas, brain, gallbladder and lung cancers. It was 7.7 years for patients with prostate cancer at age 65-74 years and >5 years for women with breast cancer. The CF was 94% for testis, 87% for thyroid cancer in women and 70% in men, 86% for skin melanoma in women and 76% in men, 66% for breast, 63% for prostate and <10% for liver, lung and pancreatic cancers. TTC was <5 years for testis and thyroid cancer patients diagnosed below age 55 years, and <10 years for stomach, colorectal, corpus uteri and melanoma patients of all ages. For breast and prostate cancers, a small excess (CRS < 95%) remained for at least 15 years. CONCLUSIONS: Estimates from this analysis should help to reduce unneeded medicalization and costs. They represent an opportunity to improve patients' quality of life.

Cancer registries - guardians of breast cancer biomarker information: A systematic review.

BACKGROUND: Breast cancer is the most common cancer and the leading cause of cancer-related death in females, with a large societal and economic impact. Decisions regarding its treatment are largely affected by the categorization into different subtypes with hormone receptor status and HER2 status being the most important predictive factors. Other biological markers play an important role for prognostic and predictive reasons. The data collection and harmonization of cancer cases are performed by cancer registries whose collection of parameters largely differs, partially including results from biomarker testing. METHODS: This systematic literature review consisting of a total of 729 reports determined whether information about biomarker testing in breast cancer cases is collected and published by cancer registries worldwide. RESULTS: The number of publications using breast cancer biomarker data from registries steeply rose with the beginning of the 21st century and some hospital-based and population-based cancer registries reacted with immediate collection of biomarker data following the recommendation of clinical guidelines. For female breast cancer, biomarkers have achieved an essential clinical value and this review points to a steady increase in the collection of biomarker data by cancer registries during the last decade. CONCLUSIONS: In the future, recommendations for biomarker data collection and coding by cancer registries may be required to ensure harmonization and comparability of the data.

A population-based approach to compare patient-reported outcomes of long-term Hodgkin's lymphoma survivors according to trial participation: a joint study from the Patient-Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship registry and European Organisation for Research and Treatment of Cancer.

Survival discrepancy between patients treated in a clinical trial and routine practice is well recognized. No study has assessed the health-related quality of life (HRQL) of long-term Hodgkin's lymphoma survivors (HLS) according to trial participation. We applied a population-based approach to examine the differences in HRQL, healthcare utilization, and satisfaction with healthcare among long-term HLS who had participated in a trial (tHLS) and those treated in routine care (rHLS). All HLS diagnosed during the period 1989-1998 and living in southern Netherlands were selected from the Netherlands Cancer Registry in 2004 to participate in the Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship registry study. Data linkage with the European Organisation for Research and Treatment of Cancer was performed in 2015 to identify trial participation. The 65 tHLS and 67 rHLS had comparable demographic and clinical characteristics. Unadjusted and adjusted models indicated no association between trial participation and HRQL. There was no evidence of differences in healthcare satisfaction. Trial participation was associated with 48% more visits to specialists in the past year (adjusted 95% confidence interval: 10-99). No association of trial participation with cancer-related contacts was observed. tHLS and rHLS had comparable long-term HRQL. Although trial participation was associated with more specialist visits, there was no evidence of an association with healthcare satisfaction and the number of cancer-related visits. Identification of trial participation in population-based cancer registry through data linkage with clinical trials enables a population-based approach to examine patient-reported outcomes differences between tHLS and rHLS.