RESUMO
OBJETIVO: Evaluar la factibilidad y la adecuación de la Guía REDEPICAN (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) a la situación actual de los Registros de Cáncer de Base Poblacional (RCBP) en América Latina y el Caribe como herramienta útil para mejorar dichos registros. MÉTODOS: La Guía fue diseñada por expertos en registros de cáncer y auditorías sanitarias, y se establecieron siete dominios para evaluarla. Para cada dominio se eligieron varios criterios con sus correspondientes estándares. Se determinaron tres niveles de cumplimiento del estándar. Se organizaron dos cursos de formación de evaluadores externos y tres paneles de discusión con expertos. La Guía se probó en seis RCBP de América Latina y España. RESULTADOS: La Guía contiene 68 criterios, 10 de ellos considerados esenciales para un RCBP. De acuerdo con la puntuación alcanzada, el registro se considera como aceptable (41-199), bueno (200-299) o excelente (300-350). El dominio sobre Métodos de registro representa el 25% de la puntuación, seguido por la Exhaustividad y validez (19%), la Difusión de resultados (19%), la Estructura (13%), la Confidencialidad y aspectos éticos (11%), la Comparabilidad (9%) y el Manual de procedimiento (3%). El proyecto piloto permitió: 1) perfeccionar criterios y estándares, 2) ampliar el concepto de calidad para incorporar las necesidades de los clientes y 3) potenciar la sección de Difusión de resultados. Dos registros latinoamericanos evaluados mejoraron su calidad hasta alcanzar el estándar de la Agencia Internacional de Investigación sobre el Cáncer. CONCLUSIONES: La guía REDEPICAN se ha elaborado teniendo en cuenta el contexto de los registros en América Latina y constituye una herramienta útil y novedosa para la mejora de la calidad de los RCBP. Además está preparada para ser utilizada en otros países y registros.
OBJECTIVE: Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. METHODS: Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. RESULTS: The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. CONCLUSIONS: Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.
Assuntos
Humanos , Guias como Assunto , Neoplasias/epidemiologia , Sistema de Registros/normas , Região do Caribe , Estudos de Viabilidade , América Latina , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
PURPOSE: Biological markers are crucial factors in order to differentiate female breast cancers and to determine the right therapy. This study aims at evaluating whether testing for biomarkers for female breast cancer has similar frequency and characteristics across and within countries. METHODS: Population-based cancer registries of the Association for cancer registration and epidemiology in Romance language countries (GRELL) were asked to complete a questionnaire on biomarkers testing. The data collected referred to invasive female breast cancer cases diagnosed between 2004 and 2009. The investigation focused on 1) the overexpression and amplification of the human epidermal growth factor receptor 2 oncogene (HER2); 2) the expression of oestrogen (ER) and progesterone (PgR) receptors; and 3) the proliferation index (PI). Weighted percentages, the heterogeneity among and within countries, and the correlation between responses and calendar years were evaluated. The study was based on 19,644 breast cancers. RESULTS: Overall, 85.9% of the cases were tested for HER2, 91.8% for both ER and PgR, and 74.1% for proliferative markers. For HER2 and ER-PgR, the frequency of testing increased from 2004 to 2009. Testing varied among countries (HER2 from 82.0% to 95.9%, ER-PgR from 89.3% to 98.9%, PI from 10% to 92%) and also within the same country (e.g. HER2 in Italy from 51% to 99%) as well as within single cancer registries. The most relevant differences were in the scores for positive/negative/not clearly defined HER2 (e.g. HER2 was defined positive if IHC 3+ in 21/33 registries), and in the cut-off of positive cells for ER/PgR (from >0% to >30%) and PI positivity (from >0% to >20%). CONCLUSIONS: Biological markers are widely tested in the Romance language countries; however, the parameters defining their positivity may vary, raising concerns about homogeneity in breast cancer classification and treatment.
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Biomarcadores Tumorais/metabolismo , Neoplasias da Mama/diagnóstico , Padrões de Prática Médica/estatística & dados numéricos , Sistema de Registros , Bélgica , Neoplasias da Mama/metabolismo , Proliferação de Células , Feminino , França , Humanos , Itália , Portugal , Receptor ErbB-2/metabolismo , Receptores de Estrogênio/metabolismo , Receptores de Progesterona/metabolismo , Estudos Retrospectivos , Espanha , Inquéritos e Questionários , Suíça , UruguaiRESUMO
OBJECTIVE: Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. METHODS: Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. RESULTS: The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. CONCLUSIONS: Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.
Assuntos
Guias como Assunto , Neoplasias/epidemiologia , Sistema de Registros/normas , Região do Caribe , Estudos de Viabilidade , Humanos , América Latina , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: The aim of this study is to analyse the evolution of the survival of patients diagnosed with prostate cancer during the period 1995-2003. MATERIAL AND METHODS: This is a population survival study of incident cases of prostate cancer in four Spanish areas: Basque Country, Girona, Murcia and Navarra. We calculated the relative survival (RS) at 5 years and its 95% confidence intervals using a cohort analysis and adjusted for age. To assess the trend in survival between the periods (1995-1999 and 2000-2003) a Poisson regression model was used, adjusting for age, region and period, obtaining the relative risk of death. RESULTS: The number of patients diagnosed during the 1995- 1999 period was 6493 and 8331 in the period 2000-03. The RS at 5 years adjusted for age increased significantly, from 75.3% (95% CI 73.3-77.2) in the period 1995-99 to 85% (95% CI 83.4-86.4) in the period 2000-03. CONCLUSION: In Spain the survival of patients with prostate cancer has increased significantly from 1999 to 2003, probably due to the advancement in diagnosis produced by the opportunistic screening of prostate-specific antigen (PSA). Differences in the dissemination and use of the PSA level could explain the observed geographic differences in the increase of survival. It would be necessary to carry out studies to quantify the produced overdiagnosis by screening with PSA in prostate cancer.
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Neoplasias da Próstata/mortalidade , Sistema de Registros , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/metabolismo , Risco , Espanha/epidemiologia , Análise de SobrevidaRESUMO
Rare thoracic cancers include those of the trachea, thymus and mesothelioma (including peritoneum mesothelioma). The aim of this study was to describe the incidence, prevalence and survival of rare thoracic tumours using a large database, which includes cancer patients diagnosed from 1978 to 2002, registered in 89 population-based cancer registries (CRs) and followed-up to 31st December 2003. Over 17,688 cases of rare thoracic cancers were selected based on the list of the RACECARE project. Mesothelioma was the most common tumour (19 per million per year) followed by epithelial tumours of the trachea and thymus (1.3 and 1.7, respectively). The age standardised incidence rates of epithelial tumours of the trachea was double in Eastern and Southern Europe versus the other European regions: 2 per million per year. Epithelial tumours of the thymus had the lowest incidence in Northern and Eastern Europe and UK and Ireland(1) and somewhat higher incidence in Central and Southern Europe.(2) Highest incidence in mesothelioma was seen in UK and Ireland(23) and lowest in Eastern Europe.(4) Patients with tumours of the thymus had the best prognosis (1-year survival 85%, 66% at 5 years). Five year survival was lowest for the mesothelioma 5% compared to 14% of patients with tumours of the trachea. Mesothelioma was the most prevalent rare cancer (12,000 cases), followed by thymus (7000) and trachea (1400). Cancer Registry (CR) data play an important role in revealing the burden of rare thoracic cancers and monitoring the effect of regulations on asbestos use and smoking related policies.
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Mesotelioma/epidemiologia , Neoplasias do Timo/epidemiologia , Neoplasias da Traqueia/epidemiologia , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Europa (Continente)/epidemiologia , Feminino , Humanos , Incidência , Lactente , Recém-Nascido , Masculino , Mesotelioma/mortalidade , Pessoa de Meia-Idade , Neoplasias Epiteliais e Glandulares/epidemiologia , Neoplasias Peritoneais/epidemiologia , Vigilância da População , Prevalência , Doenças Raras/epidemiologia , Neoplasias do Timo/mortalidade , Neoplasias da Traqueia/mortalidadeRESUMO
OBJECTIVES: Epidemiologic research on collective violence (violence exerted by and within groups in pursuit of political, social or economic goals) is very scarce despite its growing recognition as a major public health issue. This paper describes the conceptual model and design of one of the first research studies conducted in Spain aiming to assess the impact of collective violence in the health status of its victims (study known as ISAVIC, based on its Spanish title Impacto en la SAlud de la VIolencia Colectiva). METHODS: Starting with a comprehensive but non-systematic review of the literature, the authors describe the sequelae likely produced by collective violence and propose a conceptual model to explain the nature of the relationships between collective violence and health status. The conceptual model informed the ISAVIC study design and its measurement instruments. RESULTS: The possible sequelae of collective violence, in the physical, emotional and social dimensions of health, are described. Also, the review distinguishes the likely impact in primary and secondary victims, as well as the interplay with the social environment. The mixed methodological design of the ISAVIC study supports the coherence of the conceptual model described. CONCLUSIONS: The ISAVIC study suggests that collective violence may affect the main dimensions of the health status of its victims, in intimate relation to the societal factors where it operates. It is necessary to validate these results with new studies.
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Distúrbios Civis , Vítimas de Crime , Nível de Saúde , Comportamento de Massa , Terrorismo , Violência , Sintomas Afetivos/epidemiologia , Sintomas Afetivos/etiologia , Estudos Transversais , Saúde da Família , Síndrome de Adaptação Geral/epidemiologia , Síndrome de Adaptação Geral/etiologia , Homicídio , Humanos , Entrevista Psicológica , Modelos Teóricos , Política , Resiliência Psicológica , Estudos Retrospectivos , Mudança Social , Meio Social , Apoio Social , Espanha , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/etiologia , Violência/psicologia , Violência/estatística & dados numéricos , Ferimentos e Lesões/epidemiologia , Ferimentos e Lesões/etiologiaRESUMO
OBJECTIVES: Despite the ubiquity of violence and its possible impact on individual and collective health, the role and causal pathways of this phenomenon as a health determinant have not been widely studied. The present study was conducted between 2005 and 2008 in the Basque Region of Spain and aimed to estimate the health effects of collective violence on its primary victims. METHODS: A purposive sample of 33 primary victims (direct victims of collective violence and the first degree relatives of murder victims) was matched (1:5 ratio) with a random selection of persons drawn from a representative sample of the population aged more than 16 years old living in the Basque Region. Matching criteria were age, sex, educational level and province of residence. All participants completed a questionnaire that included health status measures (WHO-DAS-II-12, GHQ-12, SF-12, loneliness and stigma scales) and other potentially mediating variables such as social support and emotional climate. The results were assessed by regression analysis conditional to exposure to collective violence. RESULTS: The odds of perceiving worse physical and emotional health were 4 to 7 times higher among primary victims than among the general population and were 8 times higher for experiencing functional disability. Primary victims also perceived more loneliness and stigma and negatively valued their social support and emotional climate. No significant impact was found among the general population with some experience of interpersonal violence. CONCLUSIONS: These results suggest that collective violence is associated with substantial impairment in health status. More specific studies to assess the health effects of collective violence in the general population are warranted.
Assuntos
Nível de Saúde , Violência , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , EspanhaRESUMO
OBJECTIVE: Despite the significant influence of collective violence on the health status of its victims, there are still many gaps in our understanding of the nature of the functional limitations this violence produces and its impact on victims' wellbeing and quality of life. The ISAVIC study was carried out in the autonomous region of the Basque Country from 2005-2008 to estimate the effects of collective violence on health. The assessment included victims' perceptions of these sequelae and their impact on health. METHODS: A purposive sample of 36 primary victims was selected through contact networks and mediators. The victims' perceptions were collected through semi-structured in-depth interviews, which were later analyzed according to the study's conceptual framework. RESULTS: The victims' testimony suggests that they were profoundly traumatized by the collective violence experienced, which was often not yet completely overcome and significantly impaired their quality of life. The main functional, physical, emotional and social limitations described by the victims were identified. CONCLUSIONS: The qualitative results of this study are coherent with those obtained through the parametric phase of the ISAVIC study and provide a more complete overview of the nature of the sequelae of collective violence and its impact on quality of life. These results should be verified in larger studies and the influence of the social context on the relationship between collective violence and health should be analyzed in greater depth.
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Nível de Saúde , Violência , Feminino , Humanos , Entrevistas como Assunto , Masculino , Espanha , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The use of hospital discharge administrative data (HDAD) has been recommended for automating, improving, even substituting, population-based cancer registries. The frequency of false positive and false negative cases recommends local validation. METHODS: The aim of this study was to detect newly diagnosed, false positive and false negative cases of cancer from hospital discharge claims, using four Spanish population-based cancer registries as the gold standard. Prostate cancer was used as a case study. RESULTS: A total of 2286 incident cases of prostate cancer registered in 2000 were used for validation. In the most sensitive algorithm (that using five diagnostic codes), estimates for Sensitivity ranged from 14.5% (CI95% 10.3-19.6) to 45.7% (CI95% 41.4-50.1). In the most predictive algorithm (that using five diagnostic and five surgical codes) Positive Predictive Value estimates ranged from 55.9% (CI95% 42.4-68.8) to 74.3% (CI95% 67.0-80.6). The most frequent reason for false positive cases was the number of prevalent cases inadequately considered as newly diagnosed cancers, ranging from 61.1% to 82.3% of false positive cases. The most frequent reason for false negative cases was related to the number of cases not attended in hospital settings. In this case, figures ranged from 34.4% to 69.7% of false negative cases, in the most predictive algorithm. CONCLUSIONS: HDAD might be a helpful tool for cancer registries to reach their goals. The findings suggest that, for automating cancer registries, algorithms combining diagnoses and procedures are the best option. However, for cancer surveillance purposes, in those cancers like prostate cancer in which care is not only hospital-based, combining inpatient and outpatient information will be required.
Assuntos
Registros Hospitalares , Registro Médico Coordenado , Alta do Paciente , Neoplasias da Próstata/diagnóstico , Sistema de Registros , Algoritmos , Erros de Diagnóstico , Controle de Formulários e Registros , Humanos , Masculino , Vigilância da População/métodos , Neoplasias da Próstata/classificação , Neoplasias da Próstata/epidemiologia , Sensibilidade e Especificidade , EspanhaRESUMO
INTRODUCTION: The Minimum Basic Data Set (MBDS) is the most used database in the National Health System. The objective of this study is to evaluate the quality, in terms of coding errors of the administrative variables of the MBDS in the Basque Country Health Service. MATERIAL AND METHODS: A retrospective, descriptive study by means of reviewing 768 clinical histories from 11 hospitals. STUDY PERIOD: the year 2005. The data obtained in the clinical histories were considered comparison standard and the level of discrepancy with the MBDS was established. The administrative variable measured were: sex, dates of birth, admission, discharge and of the first intervention, admission type and circumstances at discharge, department and physician responsible at discharge. The χ(2) was used to measure the between-hospital variability of the percentage discrepancy between the clinical histories and the MBDS records. RESULTS: There were 213,091 discharge reports analysed. The percentage errors in the MBDS varied between 0.7% in the sex variable and 24.9% in the physician responsible variable. The variability between hospitals was statistically significant (p=0.001). Good quality was observed in the records of the six variables: sex, date of birth, admission date, discharge date, admission type and medical department responsible. The records were lacking in the date of first intervention and the physician responsible variables.
RESUMO
OBJECTIVE: To summarize the geographical and temporal variations in incidence of pleural mesothelioma in Europe, using the extensive data available from European general cancer registries, and consider these in light of recent trends in asbestos extraction, use and import in European countries. MATERIAL AND METHODS: The data were extracted from the European Cancer Incidence and Mortality database (EUROCIM). The inclusion criteria was acceptance in Volume VII of Cancer Incidence in Five Continents. Truncated age-standardized rates per 100,000 for the ages 40-74 were used to summarise recent geographical variations. Standardized rate ratios and 95% confidence intervals for the periods 1986-1990 and 1991-1995 were compared to assess geographical variations in risk. To investigate changes in the magnitude of most recent trends, regression models fitted to the latest available 10-year period (1988-1997) were compared with trends in the previous decade. Fitted rates in younger (40-64) and older adults (65-74) in the most recent period were also compared. RESULTS: There was a great deal of geographical variation in the risk of mesothelioma, annual rates ranging from around 8 per 100,000 in Scotland, England and The Netherlands, to lower than 1 per 100,000 in Spain (0.96), Estonia (0.85), Poland (0.85) and Yugoslavia, Vojvodina (0.56) among men. The rank of the rates for women was similar to that observed for men, although rates were considerably lower. Between 1978 and 1987, rates in men significantly increased in all countries (excepting Denmark). In the following 10 years, there was a deceleration in trend, and a significant increase was detectable only in England and France. In addition, the magnitude of recent trends in younger men was generally lower than those estimated for older men, in both national and regional cancer registry settings. CONCLUSIONS: While mesothelioma incidence rates are still rising in Europe, a deceleration has started in some countries. A decrease may begin in the next few years in certain European populations considering the deceleration of observed trends in mesothelioma and asbestos exposure, as well as the recent ban on its use.