Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research.

Cancer registry data on pediatric gliomas come with inherent limitations as inclusion criteria and registration practices of these tumors differ between registries due to specific guidelines that are lacking. These limitations can lead to biased estimates in incidence and survival outcomes. Here, we present a protocol to investigate data quality and comparability for retrospective population-based pediatric glioma studies. We describe steps for obtaining institutional permissions, dealing with data quality issues, regrouping tumors, and reporting tumors in a clinically relevant manner. For complete details on the use and execution of this protocol, please refer to Hoogendijk et al.1.

Prediction of Risk of Metastatic Recurrence for Female Breast Cancer Patients in the Presence of Competing Causes of Death.

BACKGROUND: To estimate risk of recurrence for women diagnosed with nonmetastatic breast cancer considering the risks of other causes mortality. METHODS: We extend a method based on the diagnosis-metastasis-death pathway to include risks of other causes mortality. We estimate three probabilities as cumulative incidence of: (i) being alive and recurrence-free, (ii) death for other causes before a recurrence, and (iii) recurrence. We apply the method to female breast cancer relative survival from the Surveillance, Epidemiology, and End Results Program registries (2000-2018) data. RESULTS: The cumulative incidence of recurrence shows a higher increase with more advanced cancer stage and is less influenced by age at diagnosis. At 5 years from diagnosis, the cumulative incidence of recurrence is less than 3% for those diagnosed with stage I, 10% to 13% for those diagnosed with stage II, and 37% to 47% for those diagnosed with stage III breast cancer. The estimates of recurrence considering versus ignoring the risks of dying from other causes were generally consistent, except for older women with more advanced stage, and longer time since diagnosis. In these groups, the net probability of recurrence, excluding the risks of dying from other causes, were overestimated. CONCLUSIONS: For patients with cancer who are older or long-term survivors, it is important to include the risks of other cause mortality as the crude cumulative incidence of recurrence is a more appropriate measure. IMPACT: These estimates are important in clinical decision making, as higher competing mortality may preclude the benefits of aggressive treatments.

Descriptive epidemiology of the head and neck cancers in old patients.

Background: In Europe, as in other high-income (HI) countries, quite half of the newly diagnosed patients with head and neck (H and N) cancers are older than 65 years of age and their proportion within the prevalent cases is even higher. Moreover, the incidence rate (IR) for all H and N cancers sites increased with age and the survival rate is lower in older patients (≥65), compared with younger patients (<65). The number of older patients affected by H and N cancers will increase because of the increase in life expectancy. The aim of the article is to provide an epidemiological description of H and N cancers in the elderly population. Material and methods: Incidence and prevalence data by time periods and continents were extracted from the Global Cancer Observatory. The survival information for Europe is obtained from the EUROCARE and RARECAREnet projects. In 2020, according to the results from these data, slightly more than 900,000 cases have been diagnosed with H and N cancers in the world, and approximately 40% were older than 65 years of age. This percentage was higher, reaching approximately 50% in the HI countries. The highest number of cases was in the Asiatic populations, while the highest crude IR was in Europe and Oceania. Among H and N cancers occurring in the elderly, laryngeal and oral cavity cancers were the most common, while nasal cavities and nasopharyngeal cancers were the rarest. This was true for all the countries, excluding some Asiatic populations, in which tumour of the nasopharynx was more common. The five-year survival rate in the European population was low in the elderly, compared with the younger for all H and N cancers, and it ranged from approximately 60% for both salivary-gland type and laryngeal to 22% for hypopharyngeal tumors. For the elderly, the conditional 5-year survival after surviving one year became more than 60% for many H and N epithelial tumors. Conclusion: The high variability in the H and N cancer incidence around the world is due to the distribution of the major risk factors which for the elderly are mainly alcohol and smoking. The reasons for low survival in the elderly are most likely due to the complexity of treatment, the late arrival of patients at diagnosis, and the difficult access to specialized centers.

A new cure model that corrects for increased risk of non-cancer death: analysis of reliability and robustness, and application to real-life data.

BACKGROUND: Non-cancer mortality in cancer patients may be higher than overall mortality in the general population due to a combination of factors, such as long-term adverse effects of treatments, and genetic, environmental or lifestyle-related factors. If so, conventional indicators may underestimate net survival and cure fraction. Our aim was to propose and evaluate a mixture cure survival model that takes into account the increased risk of non-cancer death for cancer patients. METHODS: We assessed the performance of a corrected mixture cure survival model derived from a conventional mixture cure model to estimate the cure fraction, the survival of uncured patients, and the increased risk of non-cancer death in two settings of net survival estimation, grouped life-table data and individual patients' data. We measured the model's performance in terms of bias, standard deviation of the estimates and coverage rate, using an extensive simulation study. This study included reliability assessments through violation of some of the model's assumptions. We also applied the models to colon cancer data from the FRANCIM network. RESULTS: When the assumptions were satisfied, the corrected cure model provided unbiased estimates of parameters expressing the increased risk of non-cancer death, the cure fraction, and net survival in uncured patients. No major difference was found when the model was applied to individual or grouped data. The absolute bias was < 1% for all parameters, while coverage ranged from 89 to 97%. When some of the assumptions were violated, parameter estimates appeared more robust when obtained from grouped than from individual data. As expected, the uncorrected cure model performed poorly and underestimated net survival and cure fractions in the simulation study. When applied to colon cancer real-life data, cure fractions estimated using the proposed model were higher than those in the conventional model, e.g. 5% higher in males at age 60 (57% vs. 52%). CONCLUSIONS: The present analysis supports the use of the corrected mixture cure model, with the inclusion of increased risk of non-cancer death for cancer patients to provide better estimates of indicators based on cancer survival. These are important to public health decision-making; they improve patients' awareness and facilitate their return to normal life.

Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study.

BACKGROUND: The EUROCARE-5 study revealed disparities in childhood cancer survival among European countries, giving rise to important initiatives across Europe to reduce the gap. Extending its representativeness through increased coverage of eastern European countries, the EUROCARE-6 study aimed to update survival progress across countries and years of diagnosis and provide new analytical perspectives on estimates of long-term survival and the cured fraction of patients with childhood cancer. METHODS: In this population-based study, we analysed 135 847 children (aged 0-14 years) diagnosed during 2000-13 and followed up to the end of 2014, recruited from 80 population-based cancer registries in 31 European countries. We calculated age-adjusted 5-year survival differences by country and over time using period analysis, for all cancers combined and for major cancer types. We applied a variant of standard mixture cure models for survival data to estimate the cure fraction of patients by childhood cancer and to estimate projected 15-year survival. FINDINGS: 5-year survival for all childhood cancer combined in Europe in 2010-14 was 81% (95% CI 81-82), showing an increase of three percentage points compared with 2004-06. Significant progress over time was observed for almost all cancers. Survival remained stable for osteosarcomas, Ewing sarcoma, Burkitt lymphoma, non-Hodgkin lymphomas, and rhabdomyoscarcomas. For all cancers combined, inequalities still persisted among European countries (with age-adjusted 5-year survival ranging from 71% [95% CI 60-79] to 87% [77-93]). The 15-year survival projection for all patients with childhood cancer diagnosed in 2010-13 was 78%. We estimated the yearly long-term mortality rate due to causes other than the diagnosed cancer to be around 2 per 1000 patients for all childhood cancer combined, but to approach zero for retinoblastoma. The cure fraction for patients with childhood cancer increased over time from 74% (95% CI 73-75) in 1998-2001 to 80% (79-81) in 2010-13. In the latter cohort, the cure fraction rate ranged from 99% (95% CI 74-100) for retinoblastoma to 60% (58-63) for CNS tumours and reached 90% (95% CI 87-93) for lymphoid leukaemia and 70% (67-73) for acute myeloid leukaemia. INTERPRETATION: Childhood cancer survival is increasing over time in Europe but there are still some differences among countries. Regular monitoring of childhood cancer survival and estimation of the cure fraction through population-based registry data are crucial for evaluating advances in paediatric cancer care. FUNDING: European Commission.

Neuroblastoma in Spain: Linking the national clinical database and epidemiological registries - A study by the Joint Action on Rare Cancers.

PURPOSE: Linkage between clinical databases and population-based cancer registries may serve to evaluate European Reference Networks' (ERNs) activity, by monitoring the proportion of patients benefiting from these and their impact on survival at a population level. To test this, a study targeting neuroblastoma (Nb) was conducted in Spain by the European Joint Action on Rare Cancers. MATERIAL AND METHODS: Subjects: Nb cases, incident 1999-2017, aged < 15 years. Linkage included: Spanish Neuroblastoma Clinical Database (NbCDB) (1217 cases); Spanish Registry of Childhood Tumours (RETI) (1514 cases); and 10 regional population-based registries (RPBCRs) which cover 33% of the childhood population (332 cases). Linkage was semiautomatic. We estimated completeness, incidence, contribution, deficit, and 5-year survival in the databases and specific subsets. RESULTS: National completeness estimates for RETI and NbCDB were 91% and 72% respectively, using the Spanish RPBCRs on International Incidence of Childhood Cancer (https://iicc.iarc.fr/) as reference. RPBCRs' specific contribution was 1.6%. Linkage required manual crossover in 54% of the semiautomatic matches. Five-year survival was 74% (0-14 years) and 90% (0-18 months). CONCLUSIONS: All three databases were incomplete as regards Spain as a whole and should therefore be combined to achieve full childhood cancer registration. A unique personal patient identifier could facilitate such linkage. Most children have access to Nb clinical trials. Consolidated interconnections between the national registry and clinical registries (including ERNs and paediatric oncology clinical groups) should be established to evaluate outcomes.

Estimating Country-Specific Incidence Rates of Rare Cancers: Comparative Performance Analysis of Modeling Approaches Using European Cancer Registry Data.

Estimating incidence of rare cancers is challenging for exceptionally rare entities and in small populations. In a previous study, investigators in the Information Network on Rare Cancers (RARECARENet) provided Bayesian estimates of expected numbers of rare cancers and 95% credible intervals for 27 European countries, using data collected by population-based cancer registries. In that study, slightly different results were found by implementing a Poisson model in integrated nested Laplace approximation/WinBUGS platforms. In this study, we assessed the performance of a Poisson modeling approach for estimating rare cancer incidence rates, oscillating around an overall European average and using small-count data in different scenarios/computational platforms. First, we compared the performance of frequentist, empirical Bayes, and Bayesian approaches for providing 95% confidence/credible intervals for the expected rates in each country. Second, we carried out an empirical study using 190 rare cancers to assess different lower/upper bounds of a uniform prior distribution for the standard deviation of the random effects. For obtaining a reliable measure of variability for country-specific incidence rates, our results suggest the suitability of using 1 as the lower bound for that prior distribution and selecting the random-effects model through an averaged indicator derived from 2 Bayesian model selection criteria: the deviance information criterion and the Watanabe-Akaike information criterion.

Staging childhood cancers in Europe: Application of the Toronto stage principles for neuroblastoma and Wilms tumour. The JARC pilot study.

BACKGROUND: The 'Toronto consensus principles and guidelines' (TG) provided paediatric-specific staging system affordable by population-based cancer registries (CRs). Within the European Rare Cancers Joint Action, a pilot study of the application of TG for childhood cancer (CC) was conducted to test the ability of CRs to reconstruct stage, describe stage across countries and assess survival by stage. PROCEDURE: Twenty-five CRs representing 15 countries contributed data on a representative sample of patients with neuroblastoma (NB) and Wilms tumour (WT) <15 years, diagnosed between 2000 and 2016. Outcome was calculated by Kaplan-Meier method and by Cox regression model. RESULTS: Stage was reconstructed for 95% of cases. Around half of the children had localised or locoregional disease at diagnosis. The proportion of metastatic cases was 38% for NB and 13% for WT. Three-year survival was >90% for locoregional cases both of NB and WT, 58% for NB M-stage and 77% for WT stage-IV. Older age was associated with more advanced stage. CONCLUSIONS: European CRs were able to reconstruct stage according to the TG. Stage should be included in the routine collection of variables. Stage information had clear prognostic value and should be used to investigate survival variations between countries or over time.

Childhood cancer epidemiology in the Czech Republic (1994-2016).

BACKGROUND: The knowledge of cancer burden in the population, its time trends and the possibility of international comparison is an important starting point for cancer control programmes. Our study aimed to evaluate trends in childhood cancer epidemiology of patients aged 0-14 years in the period 1994-2016 in the Czech Republic. METHODS: Data on childhood cancers have been obtained from the Czech National Cancer Registry. These data were validated using the clinical database of childhood cancer patients and combined with data from death certificates. Incidence and mortality trends were assessed by the joinpoint regression method. The life tables method was used to calculate the overall age-standardised five-year survival. RESULTS: The incidence trend was stable; the age-standardised (world) cancer incidence - ASR (W) - was 173.7 per 1 million children in the period 1994-2016. However, there was apparent significant decrease in mortality: ASR (W) dropped from 58.1 per 1 million children in 1994 to 21.4 per 1 million children in 2016. The overall five-year survival increased over time by 10 %. Statistically significant improvements in survival were observed in patients with lymphoid leukaemia, astrocytomas, neuroblastomas, osteosarcomas and rhabdomyosarcomas. CONCLUSION: Such a relevant increase in survival rates, and therefore also a decrease in mortality rates in the Czech Republic, is most likely due to improvements in diagnostic and treatment methods since the 1990s, which were facilitated by the concentration of childhood cancer patients in children's cancer centres.

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.

Trends and projections of pleural mesothelioma incidence and mortality in the national priority contaminated sites of Sicily (Southern Italy).

OBJECTIVES: to evaluate short-medium term incidence and mortality projections of pleural malignant mesothelioma (PMM) in Sicily Region (Southern Italy) and in its four National Priority Contaminated Sites (NPCSs). DESIGN: population-based prediction study. SETTING AND PARTICIPANTS: PMM cases from 1998 to 2016 registered by the Regional Operations Centre of the Sicilian Region. MAIN OUTCOME MEASURES: incidence and mortality trends of PMM were estimated for the period 1998-2016 from the relationships among mortality, incidence, and survival. Projections of incidence and mortality rates were obtained up to 2026. RESULTS: age-standardized incidence rates of PMM in Sicily were estimated to increase in men from 1.4 (x100,000) in 1998 to 2.29 in 2021 and to slightly decrease down to 2.2 in 2026. Women age-standardized rates in the same period are estimated to decrease from 0.52 to 0.27. In Biancavilla, age-standardized incidence rates were estimated to remain stable between 8.1 and 8.0 in men, while crude rates increased from 8.3 in 1998 to 10.7 in 2026. For women, the estimated age-standardized incidence rates are increasing from 3.08 to 6.75. In the three pooled NPCSs of Augusta-Priolo, Gela, and Milazzo, the estimates of age-standardized incidence rates show an initial trend to growth followed by a decreasing trend, both in men and women, down to predicted values in 2016 of 3.0 in men and 0.77 in women. Estimated age-standardized and crude mortality rates show, for both sexes and all areas, similar patterns as those estimated for incidence. CONCLUSIONS: in Sicily and in the three NPCSs of Gela, Milazzo, and Priolo, incidence and mortality projections are downward in both sexes. In Biancavilla, mesothelioma occurrence is estimated to increase up to 2026, slightly in males and more significantly in females.

Incidence and survival of rare cancers in the US and Europe.

Geographical variability of cancer burden was almost exclusively estimated for common cancers. Since rare cancers (RC) have become an area of priority for basic and clinical research and public health organizations, this paper provides, using a common methodology, a detailed comparison of incidence and survival for RC in the US and Europe. We estimated incidence and net survival of 199 malignant RC from data of 2 580 000 patients collected by 18 US-SEER and 94 European registries, diagnosed within the most recent common period 2000-2007. RC were defined according to the criterion of crude annual incidence rates <6/100 000. In total, 196 RC were classified as rare in both populations. Of these, 43 had incidence rates significantly different by at least 0.2 per 100 000:34 higher in the US and 9 higher in Europe. Five-year net survival for all RC combined significantly differed: 54% in the US and 48% in Europe. Survival for 62 RC was significantly higher in the US vs 6 higher in Europe. Differences were not concentrated in a particular cancer family, and were mostly relevant for cases diagnosed >65+ years of age. Use of standardized methods evidenced that incidence and survival rate of majority of RC were higher in the United States compared to Europe. Possible reasons for such differences, requiring further studies, include distribution of risk factors, ability to diagnose RC, different registration practices, and use of updated International Classification of Diseases for Oncology.

Incidence and Survival of Patients With Conjunctival Melanoma in Europe.

Importance: Conjunctival melanoma (CM) is a rare ocular tumor. Estimates of incidence and survival of patients with CM are important to researchers and policy makers. Objective: To estimate incidence and survival of patients with CM in Europe. Design, Setting, and Participants: This population-based cohort study used data from 41 European cancer registries adhering to the RARECAREnet project. All individuals diagnosed as having malignant CM from January 1995 to December 2007 coded according to the International Classification of Diseases for Oncology, Third Edition codes C69.0 (conjunctiva) and 8720-8780 (melanoma) were included. Analysis began March 2019. Main Outcomes and Measures: Trend estimates for incidence and for 5-year relative survival (the ratio of the measured survival of patients to the expected survival in the general population for the same country, age, sex, and calendar year). Crude, age-standardized, and bayesian incidence rates were calculated. Five-year relative survival was calculated by the Ederer II method with the cohort and period approach. Results: A total of 724 patients 15 years or older (512 [70.7%] were 55 years or older; 366 [50.6%] were female) were analyzed with an overall crude incidence of CM (per 1 000 000 person/y) of 0.46 (95% CI, 0.42-0.49). Crude incidence was similar in men and women (0.48; 95% CI, 0.44-0.54 and 0.46; 95% CI, 0.41-0.51, respectively) and increased with age. Age-standardized incidence increased over time only in men and was the highest in Norway and the Netherlands (more than 0.70). Only 1 case in 14 years was estimated to occur in Iceland vs about 20 cases per year in large countries such as France and Germany. Percentage of 5-year survival (83.5 overall; 95% CI, 78.6-87.3) was not different between adult and elderly patients but showed large geographical disparities across European regions (range, 66-89) and improved markedly in male patients (from 76 in 1995-1998 to 86 in 2003-2007, with a difference of 10.2 [95% CI, 1.3-19.2]; P < .05) becoming similar to that of women in the last period. Conclusions and Relevance: Although these data are only available through 2007 and based on registries not uniformly covering the European population, the study provides the first Europe-wide estimates of the incidence and relative survival of patients with CM using population-based data. Geographical differences in survival indicate room for outcome improvement in Southern, Northern, and Eastern European countries.

Role of gastrointestinal endoscopy in the screening of digestive tract cancers in Europe: European Society of Gastrointestinal Endoscopy (ESGE) Position Statement.

In Europe at present, but also in 2040, 1 in 3 cancer-related deaths are expected to be caused by digestive cancers. Endoscopic technologies enable diagnosis, with relatively low invasiveness, of precancerous conditions and early cancers, thereby improving patient survival. Overall, endoscopy capacity must be adjusted to facilitate both effective screening programs and rigorous control of the quality assurance and surveillance systems required. 1 : For average-risk populations, ESGE recommends the implementation of organized population-based screening programs FOR COLORECTAL CANCER: , based on fecal immunochemical testing (FIT), targeting individuals, irrespective of gender, aged between 50 and 75 years. Depending on local factors, namely the adherence of the target population and availability of endoscopy services, primary screening by colonoscopy or sigmoidoscopy may also be recommendable. 2 : In high-risk populations, endoscopic screening FOR GASTRIC CANCER: should be considered for individuals aged more than 40 years. Its use in countries/regions with intermediate risk may be considered on the basis of local settings and availability of endoscopic resources. 3 : For esophageal and pancreatic cancer, endoscopic screening may be considered only in high-risk individuals:- FOR SQUAMOUS CELL CARCINOMA: , in those with a personal history of head/neck cancer, achalasia, or previous caustic injury; - FOR BARRETT'S ESOPHAGUS (BE)-ASSOCIATED ADENOCARCINOMA: , in those with long-standing gastroesophageal reflux disease symptoms (i. e., > 5 years) and multiple risk factors (age ≥ 50 years, white race, male sex, obesity, first-degree relative with BE or esophageal adenocarcinoma [EAC]). - FOR PANCREATIC CANCER SCREENING: , endoscopic ultrasound may be used in selected high-risk patients such as those with a strong family history and/or genetic susceptibility.

Changes in life expectancy for cancer patients over time since diagnosis.

The aims of this study were to provide life expectancy (LE) estimates of cancer patients at diagnosis and LE changes over time since diagnosis to describe the impact of cancer during patients' entire lives. Cancer patients' LE was calculated by standard period life table methodology using the relative survival of Italian patients diagnosed in population-based cancer registries in 1985-2011 with follow-up to 2013. Data were smoothed using a polynomial model and years of life lost (YLL) were calculated as the difference between patients' LE and that of the age- and sex-matched general population. The YLL at diagnosis was highest at the youngest age at diagnosis, steadily decreasing thereafter. For patients diagnosed at age 45 years, the YLL was above 20 for lung and ovarian cancers and below 6 for thyroid cancer in women and melanoma in men. LE progressively increased in patients surviving the first years, decreasing thereafter, to approach that of the general population. YLL in the long run mainly depends on attained age. Providing quantitative data is essential to better define clinical follow-up and plan health care resource allocation. These results help assess when the excess risk of death from tumour becomes negligible in cancer survivors.

Prognosis and cure of long-term cancer survivors: A population-based estimation.

BACKGROUND: Increasing evidence of cure for some neoplasms has emerged in recent years. The study aimed to estimate population-based indicators of cancer cure. METHODS: Information on more than half a million cancer patients aged 15-74 years collected by population-based Italian cancer registries and mixture cure models were used to estimate the life expectancy of fatal tumors (LEFT), proportions of patients with similar death rates of the general population (cure fraction), and time to reach 5-year conditional relative survival (CRS) >90% or 95% (time to cure). RESULTS: Between 1990 and 2000, the median LEFT increased >1 year for breast (from 8.1 to 9.4 years) and prostate cancers (from 5.2 to 7.4 years). Median LEFT in 1990 was >5 years for testicular cancers (5.8) and Hodgkin lymphoma (6.3) below 45 years of age. In both sexes, it was ≤0.5 years for pancreatic cancers and NHL in 1990 and in 2000. The cure fraction showed a 10% increase between 1990 and 2000. It was 95% for thyroid cancer in women, 94% for testis, 75% for prostate, 67% for breast cancers, and <20% for liver, lung, and pancreatic cancers. Time to 5-year CRS >95% was <10 years for testis, thyroid, colon cancers, and melanoma. For breast and prostate cancers, the 5-year CRS >90% was reached in <10 years but a small excess remained for >15 years. CONCLUSIONS: The study findings confirmed that several cancer types are curable. Became aware of the possibility of cancer cure has relevant clinical and social impacts.

Excess risk of dying of other causes of cured cancer patients.

BACKGROUND: The proportion of patients cured of cancer is usually estimated with cure models assuming they have the same death risk as the general population. These patients, even when cured, often maintain an extra death risk compared to the overall population. Our aims were to estimate this extra risk, and to take it into account in estimating cure proportions and relative survival (RS). METHODS: We used RS mixture model with an additional parameter expressing the extra noncancer death risk of patients, assumed constant with age. We applied the model to the SEER registries survival data (1990-1994 diagnosed patients) with colorectal, breast, and lung cancers, and followed up to 2013. RESULTS: The estimated relative risk of death for cured patients versus the general population was 1.11 for colorectal, 1.16 for breast, and 2.17 and 2.12, respectively, for female and male lung cancers. Taking this extra risk into account leads, for all cancers, to a higher estimated proportion of cured and a lower RS of uncured patients. In addition, it leads to a higher estimated RS for all patients aged >70 years, and for lung cancer patients aged >50 years, at diagnosis. CONCLUSIONS: Mortality of survivors not directly due to the diagnosed cancer was significantly higher than in the general population. It affected the estimates of cure proportions for all age classes and RS in the elderly.

Bayesian estimates of the incidence of rare cancers in Europe.

BACKGROUND: The RARECAREnet project has updated the estimates of the burden of the 198 rare cancers in each European country. Suspecting that scant data could affect the reliability of statistical analysis, we employed a Bayesian approach to estimate the incidence of these cancers. METHODS: We analyzed about 2,000,000 rare cancers diagnosed in 2000-2007 provided by 83 population-based cancer registries from 27 European countries. We considered European incidence rates (IRs), calculated over all the data available in RARECAREnet, as a valid a priori to merge with country-specific observed data. Therefore we provided (1) Bayesian estimates of IRs and the yearly numbers of cases of rare cancers in each country; (2) the expected time (T) in years needed to observe one new case; and (3) practical criteria to decide when to use the Bayesian approach. RESULTS: Bayesian and classical estimates did not differ much; substantial differences (>10%) ranged from 77 rare cancers in Iceland to 14 in England. The smaller the population the larger the number of rare cancers needing a Bayesian approach. Bayesian estimates were useful for cancers with fewer than 150 observed cases in a country during the study period; this occurred mostly when the population of the country is small. CONCLUSION: For the first time the Bayesian estimates of IRs and the yearly expected numbers of cases for each rare cancer in each individual European country were calculated. Moreover, the indicator T is useful to convey incidence estimates for exceptionally rare cancers and in small countries; it far exceeds the professional lifespan of a medical doctor.

Characteristics of people living in Italy after a cancer diagnosis in 2010 and projections to 2020.

BACKGROUND: Estimates of cancer prevalence are widely based on limited duration, often including patients living after a cancer diagnosis made in the previous 5 years and less frequently on complete prevalence (i.e., including all patients regardless of the time elapsed since diagnosis). This study aims to provide estimates of complete cancer prevalence in Italy by sex, age, and time since diagnosis for all cancers combined, and for selected cancer types. Projections were made up to 2020, overall and by time since diagnosis. METHODS: Data were from 27 Italian population-based cancer registries, covering 32% of the Italian population, able to provide at least 7 years of registration as of December 2009 and follow-up of vital status as of December 2013. The data were used to compute the limited-duration prevalence, in order to estimate the complete prevalence by means of the COMPREV software. RESULTS: In 2010, 2,637,975 persons were estimated to live in Italy after a cancer diagnosis, 1.2 million men and 1.4 million women, or 4.6% of the Italian population. A quarter of male prevalent cases had prostate cancer (n = 305,044), while 42% of prevalent women had breast cancer (n = 604,841). More than 1.5 million people (2.7% of Italians) were alive since 5 or more years after diagnosis and 20% since ≥15 years. It is projected that, in 2020 in Italy, there will be 3.6 million prevalent cancer cases (+ 37% vs 2010). The largest 10-year increases are foreseen for prostate (+ 85%) and for thyroid cancers (+ 79%), and for long-term survivors diagnosed since 20 or more years (+ 45%). Among the population aged ≥75 years, 22% will have had a previous cancer diagnosis. CONCLUSIONS: The number of persons living after a cancer diagnosis is estimated to rise of approximately 3% per year in Italy. The availability of detailed estimates and projections of the complete prevalence are intended to help the implementation of guidelines aimed to enhance the long-term follow-up of cancer survivors and to contribute their rehabilitation needs.