Registration of Urothelial Tumours in Cancer Registries: How to Improve and Make It More Useful?

Due to the differences in the definition, criteria of inclusion and coding of urothelial tumours (UTs), data of different cancer registries (CRs) are not comparable. The aim of this work is to study current practices of registration of UT in the European CR of the GRELL countries in order to propose new registration rules to correctly describe incidence and survival of progressive tumours like UT. A questionnaire was sent to 91 CRs to assess whether non-invasive (NI)UT, multiple UTs, UTs occurring outside or before the operating period and time between UTs are currently considered in tumour recording and reporting. All participating CRs (n = 42) record a NI bladder UT in sole occurrence. In case of progressive bladder UT, 98% of the CRs record at least one NIUT but 19% don't record the invasive progression. 17% of the CRs don't record an invasive pelvic tumour that occurs after a NI bladder UT. 19% of the CRs don't record an invasive bladder UT that followed a NI tumour occurring outside the zone or period of time. The recording of two synchronous UTs is carried out with a grouping topography for 36% of the CRs. The same analysis conducted on the reporting of the incidence of UT also shows heterogeneity. We conclude that there is an urgent need to define clear rules for the registration of UT.

Descriptive epidemiology of primary malignant and non-malignant central nervous tumors in Spain: Results from the Girona Cancer Registry (1994-2013).

BACKGROUND: Systematic registration of non-malignant central nervous system (CNS) tumors is a rare practice among European cancer registries. Thus, the real burden of all CNS tumors across Europe is underestimated. The Girona Cancer Registry provides here the first data on CNS tumor incidence and survival trends in Spain for all histological types, including malignant and non-malignant tumors. METHODS: Data on all incident cases of primary CNS tumors notified to the Girona population-based cancer registry from 1994 to 2013 (n=2,131) were reviewed. Incidences rates (IRs) were standardized to the 2013 European population and annual percentage changes (EAPC) were estimated using a piecewise log linear model. 1- and 5-year observed (OS) and relative survival (RS) were also calculated. Results were expressed by sex, age-group, histological subtype and behavior. RESULTS: The overall IR was 16.85 and increased across the period of study (EAPC=+2.2%). The proportion and IRs of malignant (50.2%; IR=9.35) and non-malignant cases (49.8%; IR=9.14) were similar; however, non-malignant tumors were more frequent in women (sex ratio=0.63). The most frequently reported histologies were meningioma (27.6%; IR=5.11) and glioblastoma (22.2%; IR=4.15), which also accounted for the highest and lowest 5-year RS (80.2%; 3.7%, respectively). Globally, 5-year RS was lower in men (42.6% vs. 58.3%, respectively) and in the elderly (64.9% for 0-14years vs. 23.0% for >74years). CONCLUSION: This study presents a comprehensive overview of the epidemiology of malignant and non-malignant CNS primary tumors from the well-established region-wide Girona Cancer Registry (1994-2013). Incidence rates were recovered for all histologies. Survival is still dramatically associated to both age and histological subtype.

Incidence and survival of Hodgkin lymphoma patients in Girona (Spain) over three decades: a population-based study.

Hodgkin lymphoma (HL) is characterized by heterogeneous histologic findings, clinical presentation and outcomes. Using the Girona population-based cancer registry data we sought to explore the incidence of HL over three decades in Girona Province (Spain) and examine the relationship between clinical features at diagnosis and survival. From 1985 to 2013, 459 cases were recorded. Patients were stratified by sex, age group, stage at diagnosis, histological subtypes and the presence of B-symptoms. The crude incidence rate (CR) was 2.7 and the corresponding European age-adjusted rate was 2.6, being higher in men than in women (sex ratio=1.6). Incidence remained constant throughout the period of study. Nodular sclerosis was the most frequent histology and showed an increasing incidence over time [estimated annual percentage change=+2.4, 95% confidence interval (CI): 0.8-4.0]. The 5-year observed survival and relative survival of patients diagnosed with HL were 73.1% (95% CI: 69.0-77.5) and 74.6% (95% CI: 70.0-79.4), respectively. No statistical differences in observed survival were observed across the three decades of study (P=0.455). Clinical parameters negatively influencing 5-year relative survival in the multivariate analysis were as follows: age at diagnosis at least 65 years; clinical stage IV; and presence of B-symptoms. These current patterns of presentation and outcomes of HL help delineate key populations in order to explore risk factors for HL and strategies to improve treatment outcomes.

Urinary tract cancer survival in Europe 1999-2007: Results of the population-based study EUROCARE-5.

BACKGROUND: This work presents relative survival estimates regarding urinary tract tumours among adult patients (age⩾15years) diagnosed in Europe. It reports on survival estimates of cases diagnosed in 2000-2007, and on survival time trends from 1999-2001 to 2005-2007. METHODS: Data on 677,340 adult urinary tract tumour patients, (429,154 cases of invasive and non-invasive bladder and 248,186 cases of invasive kidney cancers) diagnosed between 2000 and 2007 were provided by 86 population-based cancer registries from 29 European countries. The complete approach was used to estimate survival in 2000-2007; the period approach was used to estimate survival over time. RESULTS: The age-standardised 5-year relative survival for patients with kidney tumours diagnosed in Europe during 2000-2007 was 60%. The best prognosis was observed in Southern and Central Europe and prognosis improved in all regions along the time period. For invasive and non-invasive patients with bladder tumours combined the age-standardised 5-year relative survival in Europe was 68%. The best prognosis was observed in Southern and Northern Europe. However, in Scotland and The Netherlands the relative survival was significantly lower, although the survival estimates for these two countries were based on invasive tumours only. CONCLUSIONS: Differences in registration practices affect comparisons of survival values between European countries, especially in patients with urinary bladder cancers. The between-country variation in survival is influenced by the varying use of diagnostic investigation in urinary tract tumours. Further data on stage at diagnosis can help to elucidate the influence of diagnostic intensity or early diagnosis on the survival patterns.

Neuroendocrine tumors: a population-based study of incidence and survival in Girona Province, 1994-2004.

BACKGROUND: Neuroendocrine tumors (NETs) belong to a rare and heterogeneous group of neoplasms with a wide range of aggressiveness. Little information is available about incidence and mortality of NETs in the World population. The objective of this study was to report the incidence and survival of these tumors in Girona Province. METHODS: We include all ICD-O3 codes that codified a NET, period 1994-2004. Data from malignant NETs came directly from the Girona Cancer Registry, and data from benign or with uncertain behavior NETs directly from the Anatomic-Pathological Laboratories. RESULTS: We identified 698 NETs, the most frequent were those aroused in the bronco-pulmonary system (65.75%), followed by the gastro-entero-pancreatics (GEP) (12.75%). Small cell lung carcinomas were the most frequent NETs of the bronco-pulmonary system (92.59%), with an age-standardized incidence rate (ASRw, world population standard) of 4.29/100,000 person-years. Carcinoid lung tumors had an ASRw of 0.32/100,000 person-years and a 5-year relative survival (RS) of 77%. The ASRw of GEP NETs was 1.07/100,000 person-years, and the 5-year RS was 95%. The 5-year RS of pancreas was 43%. Thyroid NETs had an ASRw of 0.17/100,000 person-years, and a 5-year RS of 75%. Pheocromocytomas had an ASRw of 0.47/100,000 person-years and a 5-year RS of 85%. Merkel cell carcinomas had an ASRw of 0.11/100,000 person-years, with a 5-year RS of 50%. CONCLUSION: To our knowledge, this is the first population-based study reporting incidence of NETs in Spain. Our data was consistent with other European reports. By providing the incidence and survival of NETs in Girona Province, this study contributes to a better understanding of these rare tumors.

Population-based incidence and survival of central nervous system (CNS) malignancies in Girona (Spain) 1994-2005.

The purpose of this study was to describe the incidence and survival of primary Central Nervous System (CNS) malignancies using data from the population-based cancer registry for Girona province (north-east Spain).We included all cases of primary CNS malignancies registered between 1994 and 2005. Pathological diagnoses were reviewed and grouped according to the 2007 WHO Classification. Meningeal, soft tissue tumours, spinal cord tumours and primary CNS lymphoma were not included. Cases notified only by death certificate were excluded from the survival analysis. Kaplan and Meier survival curves were calculated from date of diagnosis to death or end of study (31 December 2005), as was relative survival. A total of 493 new CNS cancer patients were registered during the study period: 49.3% astrocytic, 3.4% oligodendroglial and oligoastrocytic tumours, 2.6% ependimal tumours, 3.7% embryonal tumours, 0.2% choroid plexus and 41% without histological confirmation. The mean age (in years) for embryonal tumours was 18.17 years, these being the younger patients in the sample, and 66.34 years for those without histological confirmation, the older patients. Overall, the age standardised incidence rate was 5.88 cases/100,000 people/year (men = 6.81; women = 4.99) with an increasing trend by age until the 70-74 age group. Five-year observed survival rates were: 14.6% for astrocytic tumours, 35.7% for oligodendroglial and oligoastrocytic tumours, 41.0% for ependymal tumours, 32.4% for embryonal tumours and 7.5% for those without histological confirmation (log rank test: P < 0.001). Five-year observed survival rates for astrocytic tumours were analyzed separately by tumour grading, with 37% for diffuse astrocytoma, 7.1% for anaplastic astrocytoma and 4.7% for glioblastoma (log rank test: P < 0.001).Our results show that astrocytic tumours are most frequently diagnosed and glioblastoma patients have the worst survival figures for the area covered by our population cancer registry.The high observed incidence of histologically unverified tumours is most probably due to easy access to state of the art CNS imaging in our area.

[Population-based incidence of lymphoid neoplasms by histological subtypes in Girona (Spain), 1994-2001]. / Incidencia poblacional de las neoplasias linfoides según el subtipo histológico (Clasificación de la OMS) en Girona, 1994-2001.

BACKGROUND AND OBJECTIVE: We aimed to assess the distribution of the lymphoid neoplasms and their histological subtypes in accordance with the World Health Organization (WHO) classification by calculating their incidences rates in our area. PATIENTS AND METHOD: From January 1994 to December 2001, 1,288 patients diagnosed with lymphoid neoplasms were recruited in the population-based Cancer Registry of Girona. Former pathological and hematological diagnoses were reviewed and some were prospectively reclassified following the latest WHO classification. RESULTS: Following criteria established by WHO classification the distribution of lymphoid neoplasms was as follows: 77.3% B-cell neoplasm, 5.9% T-cell neoplasm, 8.7% Hodgkin lymphoma and 8,2% was unclassifiable. From 1994 TO 2001 the lymphoid neoplasm crude incidence rates was 35.8 per 100,000 men-year, while it was 25.7 new cases per 100,000 women-year. In children (< 15 years old), precursor B-lymphoblastic lymphoma/leukemia (65%) and Hodgkin lymphoma (20%) were the most frequent lymphoid neoplasm, whereas myeloma (17.8%), diffuse large B-cell lymphoma (13.5%) showed the highest incidence rate in adults. CONCLUSIONS: A higher incidence rate of lymphoid neoplasms was found in men in our area compared with other geographical areas in Spain, which could suggested a faster approximation to the pattern observed in industrialized societies. The cause of this geographical distribution is unknown.

Prevalence of BRCA1 and BRCA2 germline mutations in young breast cancer patients: a population-based study.

Our aim was to estimate the prevalence of mutations in the BRCA1 and BRCA2 genes among unselected incident cases of breast cancer in young women. We identified 158 incident breast cancer cases diagnosed before age 46 years in predefined geographic areas in Girona and Tarragona, Spain, during 1995-1997. Of these, 136 (86%) provided information on family history of cancer and were screened for BRCA1 and BRCA2 mutations. Nine of the 136 (6.6%) were found to carry BRCA deleterious mutations (MUT) (1 BRCA1 and 8 BRCA2), and 20 were detected with rare BRCA variants of unknown significance (UV). Both MUT and US BRCA alterations were more frequent in younger patients: 7 (11.6%) MUT and 12 (19.3%) UV carriers were found in the group of 62 patients younger than 40 years, whereas 2 (2.7%) MUT and 9 (12%) US carriers were identified in the group of 74 patients aged 40-45. Family history of breast and ovarian cancers suggestive of hereditary condition (at least 2 first- or second-degree relatives affected with breast cancer or at least 1 relative affected with ovarian cancer or early-onset breast cancer) was absent for 5 of 9 MUT carriers. This suggests that BRCA screening policies based on family history of cancer would miss a considerable proportion of BRCA mutations. Mutations in the BRCA1 and BRCA2 genes explain at least 10% of breast cancer cases diagnosed before age 40 years. The contribution of these genes to early-onset breast cancer is likely to be even higher given that certain UV cases might be disease-associated.