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.

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.

Survival differences between patients with Hodgkin lymphoma treated inside and outside clinical trials. A study based on the EORTC-Netherlands Cancer Registry linked data with 20 years of follow-up.

The survival of patients diagnosed with Hodgkin lymphoma (HL) has improved from 70% to 90% in clinical trials. However, population-based data has shown lower survival. In this study, clinical trial data were linked with cancer registry to identify trial and non-trial participants and differences in overall survival and associated factors were assessed. In 1986-2004, 27% of HL patients aged 15-70 years participated in clinical trials. Compared to non-trial participants, trial participants were younger (median age, 31 vs. 34 years), had staging registered more accurately and had an 8% higher 20-year survival rate (73% vs. 65%). After adjusting for baseline differences, no differences in survival (hazard ratio = 0·96, 95% confidence interval 0·82-1·12), or in subgroup analysis according to stage, remained. Over time, increased administration of chemotherapy in combination with radiotherapy, together with the decreased use of radiotherapy alone was observed among the trial population. This trend was later followed in non-trial participants, coinciding with a similar 'take-up' in survival. The observed superior survival among patients with HL treated in clinical trials can be largely explained by the differences in baseline characteristics, particularly younger age. High trial participation rate and centralized expertise facilitates the implementation of trial findings to real-world practice.

Care provided and care setting transitions in the last three months of life of cancer patients: a nationwide monitoring study in four European countries.

BACKGROUND: This is an international study across four European countries (Belgium[BE], the Netherlands[NL], Italy[IT] and Spain[ES]) between 2009 and 2011, describing and comparing care and care setting transitions provided in the last three months of life of cancer patients, using representative GP networks. METHODS: General practitioners (GPs) of representative networks in each country reported weekly all non-sudden cancer deaths (+18y) within their practice. GPs reported medical end-of-life care, communication and circumstances of dying on a standardised questionnaire. Multivariate logistic regressions (BE as a reference category) were conducted to compare countries. RESULTS: Of 2,037 identified patients from four countries, four out of five lived at home or with family in their last year of life. Over 50% of patients had at least one transition in care settings in the last three months of life; one third of patients in BE, IT and ES had a last week hospital admission and died there. In the last week of life, a treatment goal was adopted for 80-95% of those having palliation/comfort as their treatment goal. Cross-country differences in end-of-life care provision included GPs in NL being more involved in palliative care (67%) than in other countries (35%-49%) (OR 1.9) and end-of-life topics less often discussed in IT or ES. Preference for place of death was less often expressed in IT and ES (32-34%) than in BE and NL (49-74%). Of all patients, 88-98% were estimated to have distress from at least one physical symptom in the final week of life. CONCLUSION: Although palliative care was the main treatment goal for most cancer patients at the end of life in all four countries, frequent late hospital admissions and the symptom burden experienced in the last week of life indicates that further integration of palliative care into oncology care is required in many countries.

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.

Facing further challenges in cancer data quality and harmonisation.

This article highlights the recent and ongoing activities of European population-based cancer registries (PBCRs) in data quality and harmonisation in the framework of the collaboration between the European Network of Cancer Registries (ENCR) and the Directorate-General Joint Research Centre (JRC), the science and knowledge centre of the European Commission. The article concludes the Frontiers in Oncology's Research Topic "Joining Efforts to Improve Data Quality and Harmonization Among European Population-Based Cancer Registries", which has been an opportunity for several European researchers to share their experience on cancer data quality and harmonisation. Such experience will be helpful for PBCRs in view of future challenges and opportunities in cancer epidemiology, with a few examples discussed in the present article.

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.

Cost profiles of colorectal cancer patients in Italy based on individual patterns of care.

BACKGROUND: Due to changes in cancer-related risk factors, improvements in diagnostic procedures and treatments, and the aging of the population, in most developed countries cancer accounts for an increasing proportion of health care expenditures. The analysis of cancer-related costs is a topic of several economic and epidemiological studies and represents a research area of great interest to public health planners and policy makers. In Italy studies are limited either to some specific types of expenditures or to specific groups of cancer patients. Aim of the paper is to estimate the distribution of cancer survivors and associated health care expenditures according to a disease pathway which identifies three clinically relevant phases: initial (one year following diagnosis), continuing (between initial and final) and final (one year before death). METHODS: The methodology proposed is based on the reconstruction of patterns of care at individual level by combining different data sources, surveillance data and administrative data, in areas covered by cancer registration. RESULTS: A total colorectal cancer-related expenditure of 77.8 million Euros for 18012 patients (corresponding to about 4300 Euros per capita) is estimated in 2006 in two Italian areas located in Tuscany and Veneto regions, respectively. Cost of care varies according to the care pathway: 11% of patients were in the initial phase, and consumed 34% of total expenditure; patients in the final (6%) and in the continuing (83%) phase consumed 23% and 43% of the budget, respectively. There is an association between patterns of care/costs and patients characteristics such as stage and age at diagnosis. CONCLUSIONS: This paper represents the first attempt to attribute health care expenditures in Italy to specific phases of disease, according to varying treatment approaches, surveillance strategies and management of relapses, palliative care. The association between stage at diagnosis, profile of therapies and costs supports the idea that primary prevention and early detection play an important role in a public health perspective. Results from this pilot study encourage the use of such analyses in a public health perspective, to increase understanding of patient outcomes and economic consequences of differences in policies related to cancer screening, treatment, and programs of care.

Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe.

BACKGROUND: Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology. METHODS: Nationwide representative Networks of General Practitioners (GPs)--ie epidemiological surveillance systems representative of all GPs in a country or large region of a country--in Belgium, The Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009-2010). RESULTS: A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in The Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries. CONCLUSION: Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.

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.