RESUMO

Background: Gaucher's disease (GD), a lysosomal storage disorder, poses significant treatment challenges. This 23-year study assesses survival rates and treatment efficacy in Brazilian GD patients, integrating data from a 16-year cohort (2000-2015) and the TABNET/DATASUS medicines distribution data (1999-2022). Objective: To investigate the survival of GD patients in Brazil, identifying key risk factors and evaluating the impact of treatments funded by the Brazilian National Health System (SUS). Methodology: A 16-year retrospective cohort study was conducted using the National Database of SUS. Patients diagnosed with GD and treated with Enzyme Replacement Therapy (ERT) or Substrate Synthesis Inhibition (SSI) from 2000 to 2015 were included. Survival analysis was performed using Kaplan-Meier method and Cox proportional hazards model. The data from TABNET/DATASUS system from 1999 to 2022 was used to assess the trend in drug distribution beyond the main cohort. Results: The study included 1,234 patients. Survival rates at 5 and 10 years were 93.2% and 88.5%, respectively, with age and comorbidities like diabetes, cardiovascular diseases, and Parkinson's disease significantly affecting survival. Patients who received doses lower than DDD (n = 880) demonstrated a survival probability of 91.8%. In contrast, those with doses equal to the DDD (n = 15) showed a 100% survival probability, as no events were observed in this group. The greater than DDD group (n = 339) exhibited a survival probability of 81%. A log-rank test indicated a borderline statistical significance (p = 0.058) in the survival distributions among the different DDD adherence, with the lower dose group showing a favorable trend. Conclusion: This study provides insights into the survival rates and associated risk factors for GD patients in Brazil, contributing to the global understanding of GD and its management. While we acknowledge the inherent limitations of relying largely on electronic medical records and categorical codes, our findings underscore the need for early diagnosis, timely initiation of treatment, effective management of comorbidities, and personalized dosing strategies to improve patient outcomes. Future studies should aim to incorporate clinical verification of electronic data to further enhance the reliability and applicability of these findings.

RESUMO

In this paper, we study the impact of combining profile and network data in solving record de-duplication problems. We also assess the influence of a range of prior distributions on the linkage structure, and explore the use of stochastic gradient Hamiltonian Monte Carlo methods as a faster alternative to obtain samples from the posterior distribution for network parameters. Our methodology is evaluated using the RLdata500 data, which is a popular dataset in the record linkage literature.

RESUMO

Resumo As anomalias congênitas (AC) configuram um relevante problema para a saúde pública global, afetando em média de 3% a 6% dos recém-nascidos em todo o mundo. No Brasil, ocupam a segunda posição entre os principais grupos de causas de óbito infantil. Assim, estudos amplos são necessários para mostrar o impacto das AC na saúde infantil. O presente estudo descreve a tendência temporal da prevalência e da mortalidade infantil por AC entre nascidos vivos (NV) no Brasil e em suas cinco regiões de 2001 a 2018, utilizando dados vinculados entre as bases de dados do Sistema de Informações sobre Nascidos Vivos (SINASC) e do Sistema de Informações sobre Mortalidade (SIM). A prevalência e mortalidade infantil por AC mostrou-se crescente no Brasil na maioria das regiões, principalmente no Norte e no Nordeste. Aquelas do aparelho osteomuscular foram as mais prevalentes ao nascimento (29,8/10.000 NV); as do aparelho circulatório passaram para a segunda posição (12,7/10.000 NV) após a vinculação das bases e representam a primeira causa de morte desse grupo. A técnica de vinculação de dados aplicada corrigiu a prevalência nacional das AC em 17,9% no período analisado, após serem recuperadas as AC notificadas no SIM, mostrando ser uma boa ferramenta para melhorar a qualidade das informações das AC.

Abstract Congenital anomalies (CA) are a relevant problem for global public health, affecting about 3% to 6% of newborns worldwide. In Brazil, these are the second main cause of infant mortality. Thus, extensive studies are needed to demonstrate the impact of these anomalies on births and deaths. The present study describes the temporal trends of prevalence and infant mortality due to CA among live births in Brazil and regions, from 2001 to 2018, using the related data between the Live Birth Information System (SINASC, acronym in Portuguese) and the Mortality Information System (SIM, acronym in Portuguese). The prevalence and infant mortality due to CA has increased in Brazil and in most regions, especially in the Northeast and North. CAs in the musculoskeletal system were the most frequent at birth (29.8/10,000 live births), followed by those in the circulatory system (12.7/10,000 live births), which represented the primary cause of death in this group. The applied linkage technique made it possible to correct the national prevalence of CA by 17.9% during the analyzed period, after retrieving the anomalies reported in SIM, thereby proving to be a good tool to improve the quality of information on anomalies in Brazil.

RESUMO

BACKGROUND: Linked datasets that enable longitudinal assessments are scarce in low and middle-income countries. OBJECTIVES: We aimed to assess the linkage of administrative databases of live births and under-five child deaths to explore mortality and trends for preterm, small (SGA) and large for gestational age (LGA) in Mexico. METHODS: We linked individual-level datasets collected by National statistics from 2008 to 2019. Linkage was performed based on agreement on birthday, sex, residential address. We used the Centre for Data and Knowledge Integration for Health software to identify the best candidate pairs based on similarity. Accuracy was assessed by calculating the area under the receiver operating characteristic curve. We evaluated completeness by comparing the number of linked records with reported deaths. We described the percentage of linked records by baseline characteristics to identify potential bias. Using the linked dataset, we calculated mortality rate ratios (RR) in neonatal, infants, and children under-five according to gestational age, birthweight, and size. RESULTS: For the period 2008-2019, a total of 24,955,172 live births and 321,165 under-five deaths were available for linkage. We excluded 1,539,046 records (6.2%) with missing or implausible values. We succesfully linked 231,765 deaths (72.2%: range 57.1% in 2009 and 84.3% in 2011). The rate of neonatal mortality was higher for preterm compared with term (RR 3.83, 95% confidence interval, [CI] 3.78, 3.88) and for SGA compared with appropriate for gestational age (AGA) (RR 1.22 95% CI, 1.19, 1.24). Births at <28 weeks had the highest mortality (RR 35.92, 95% CI, 34.97, 36.88). LGA had no additional risk vs AGA among children under five (RR 0.92, 95% CI, 0.90, 0.93). CONCLUSIONS: We demonstrated the utility of linked data to understand neonatal vulnerability and child mortality. We created a linked dataset that would be a valuable resource for future population-based research.

Assuntos

RESUMO

Linking records of the same person from different sources makes it possible to build administrative cohorts and perform longitudinal analyzes, as an alternative to traditional cohort studies, and have important practical implications in producing knowledge in public health. We implemented the Fellegi-Sunter probabilistic linkage method to a sample of records from the Mexican Automated System for Hospital Discharges and the Statistical and Epidemiological System for Deaths and evaluated its performance. The records in each source were randomly divided into a training sample (25%) and a validation sample (75%). We evaluated different types of blocking in terms of complexity reduction and pairs completeness, and record linkage in terms of sensitivity and positive predictive value. In the validation sample, a blocking scheme based on trigrams of the full name achieved 95.76% pairs completeness and 99.9996% complexity reduction. After pairs classification, we achieved a sensitivity of 90.72% and a positive predictive value of 97.10% in the validation sample. Both values were about one percentage point higher than that obtained in the automatic classification without clerical review of potential pairs. We concluded that the linkage algorithm achieved a good performance in terms of sensitivity and positive predictive value and can be used to build administrative cohorts for the epidemiological analysis of populations with records in health information systems.

RESUMO

Linked administrative data offer a rich source of information that can be harnessed to describe patterns of disease, understand their causes and evaluate interventions. However, administrative data are primarily collected for operational reasons such as recording vital events for legal purposes, and planning, provision and monitoring of services. The processes involved in generating and linking administrative datasets may generate sources of bias that are often not adequately considered by researchers. We provide a framework describing these biases, drawing on our experiences of using the 100 Million Brazilian Cohort (100MCohort) which contains records of more than 131 million people whose families applied for social assistance between 2001 and 2018. Datasets for epidemiological research were derived by linking the 100MCohort to health-related databases such as the Mortality Information System and the Hospital Information System. Using the framework, we demonstrate how selection and misclassification biases may be introduced in three different stages: registering and recording of people's life events and use of services, linkage across administrative databases, and cleaning and coding of variables from derived datasets. Finally, we suggest eight recommendations which may reduce biases when analysing data from administrative sources.

Assuntos

RESUMO

Background: Public health research frequently requires the integration of information from different data sources. However, errors in the records and the high computational costs involved make linking large administrative databases using record linkage (RL) methodologies a major challenge. Methods: We present Tucuxi-BLAST, a versatile tool for probabilistic RL that utilizes a DNA-encoded approach to encrypt, analyze and link massive administrative databases. Tucuxi-BLAST encodes the identification records into DNA. BLASTn algorithm is then used to align the sequences between databases. We tested and benchmarked on a simulated database containing records for 300 million individuals and also on four large administrative databases containing real data on Brazilian patients. Results: Our method was able to overcome misspellings and typographical errors in administrative databases. In processing the RL of the largest simulated dataset (200k records), the state-of-the-art method took 5 days and 7 h to perform the RL, while Tucuxi-BLAST only took 23 h. When compared with five existing RL tools applied to a gold-standard dataset from real health-related databases, Tucuxi-BLAST had the highest accuracy and speed. By repurposing genomic tools, Tucuxi-BLAST can improve data-driven medical research and provide a fast and accurate way to link individual information across several administrative databases.

Assuntos

RESUMO

INTRODUCTION: Suicides and suicide attempts are major public health problems, and coping strategies are hampered by insufficient or inadequate notifications. Data accuracy influences the formulation of public and mental health policies and suicide prevention strategies. The objective of this study was to analyze the completeness of self-harm and suicide records in the state of Pernambuco, Brazil, 2014-2016. METHODS: This is an evaluative study with a descriptive design. The data were collected from suicide attempt records from the Notifiable Diseases Information System and suicide records from the Mortality Information System. Probabilistic linkage was used to relate these databases, and the degree of completeness of the variables was calculated. Completeness was classified into the following categories: good (≥ 75.1%), regular (50.1%-75.0%), low (25.1%-50.0%), and very low (≤ 25.0%). RESULTS: In the analyzed period, 1,404 notifications of self-harm were studied, with an overall mean completeness of 86.2%. In addition, 1,050 suicide records were analyzed, with an overall mean completeness of 95.8%. Most variables referring to suicide attempts had good completeness, with the exception of the variables "occupation" and "education." The completeness of all suicide-related variables was rated as good. After linkage, a significant improvement was observed in the degree of completeness of the variable "occupation". CONCLUSION: The results of this study showed that the completeness of self-harm and suicide variables improved from the first to the last year. The integration of data from different information systems provides an opportunity to improve suicide prevention programs and the quality of available information. Continuous efforts to increase the completeness and reliability of suicide surveillance systems are fundamental to describe the epidemiological profile and, consequently, plan preventive actions, in addition to contributing to the development and reformulation of strategies aimed at reducing morbidity and mortality related to suicidal behavior.

Assuntos

RESUMO

Introdução: Em 2020, conclui-se o ciclo da Década de Ações para a Segurança no Trânsito proposto pela Organização das Nações Unidas. Para atingir a meta de redução das mortes estabelecida pela ONU, em 2010, teve início o Programa Vida no Trânsito (PVT), cuja implementação está organizada em quatro etapas: articulação intersetorial; qualificação e integração dos dados; ações integradas de segurança no trânsito; e monitoramento das ações. Considera-se importante identificar quais etapas não estão implementadas e apontar possíveis estratégias para o ajuste do programa, de modo a atingir suas metas. A possibilidade de se obter uma plataforma web capaz de vincular bases epidemiológicas de dados consolidados, permitindo o amplo uso desses na vigilância para a produção de informação sobre os acidentes de trânsito, faz-se oportuna à avaliação do desempenho dessa ferramenta digital. Objetivo: Avaliar o grau da implementação do PVT em 31 municípios, a confiabilidade e a validade no pareamento probabilístico de bases de dados (record linkage) realizado na plataforma digital especialmente desenvolvida para a o PVT. Método: foi realizada uma avaliação formal e normativa, composta de duas fases: a) validação de conteúdo de 28 indicadores da implementação do PVT e b) a avaliação do grau da implementação, a partir de dois inquéritos (2015 e 2017) numa amostra de 30 municípios. Em seguida, Record Linkage (RL) probabilístico foi realizado com uso do software Reclink e da plataforma digital PD-PVT. Estes estudos utilizaram registros disponíveis na base de dados de vítimas do trânsito (VIT), no Sistema de Internação Hospitalar (SIH) e no Sistema de Informação de Mortalidade (SIM), referentes ao segundo trimestre de 2016 de um município participante do PVT. Foi então verificado o desempenho do RL na PD-PVT, por meio da análise das medidas de concordância e validade comparadas à rotina do RL realizado no Reclink. Resultados: O PVT encontra-se parcial ou totalmente implementado em 84,61% dos municípios. Observou-se um aumento no número de municípios implementados, passando de oito para dez, nos anos de 2015 a 2017. Entre as quatro etapas da metodologia do PVT, apenas a primeira, encontra-se implementada. Acerca do desempenho do RL na PD-PVT, a integração entre as bases SIH-VIT e SIM-VIT mostraram uma excelente confiabilidade entre os avaliadores (Kappa 0,95-0,98). Para validade, os resultados do PD-PVT foram: Precision 1,00 (IC 1,00-1,00) para o SIM-VIT; Recall 1,00 (CI 1,00-1,00) para SIH-VIT; e AUCPR 0,99 (CI 0,99-1,00) para SIH-VIT. Conclusão: Este estudo encontrou avanços no processo de implementação do programa nos anos avaliados, no entanto, apenas a primeira etapa apresenta-se implementada nos municípios avaliados. A técnica de RL realizada na PD-PVT mostrou excelente desempenho. É relevante destacar que uma das grandes vantagens desse sistema web está no processo automatizado de pareamento probabilístico. Diante disso, acredita-se que a redução dos passos torne o processo de RL mais ágil e mais simples, possibilitando, dessa forma a incorporação da técnica de RL, na rotina do serviço dos profissionais envolvidos, o que deverá contribuir para o andamento das atividades seguintes à etapa de qualificação da informação.

Introduction: In 2020, the cycle of the Decade of Actions for Traffic Safety proposed by the United Nations Organization ends. In order to reach the goal of reducing deaths caused by the UN, in 2010, the Program Vida no Trânsito (PVT) was started, whose implementation is organized in four stages: intersectoral articulation; qualification and integration of data; integrated traffic safety actions; and monitoring of actions. It is considered important to identify which steps are not implemented and point out possible adjustments to the program in order to achieve its goals. The possibility of obtaining a web platform capable of linking epidemiological databases of consolidated data, allowing wide use in surveillance for the production of information on traffic accidents, makes the performance evaluation of this digital tool opportune. Objective: To evaluate the degree of implementation of the PVT in 31 municipalities, the reliability and validation of the probabilistic pairing of databases (record linkage) carried out on the digital platform specially developed for the PVT. Method: a formal and normative one was carried out, consisting of two phases: a) content validation of 28 indicators of the PVT implementation and b) the evaluation of the degree of implementation, based on two surveys (2015 and 2017) in a sample of 30 municipalities. Then, probabilistic Record Linkage (RL) was performed using the Reclink software and the PD-PVT digital platform. These studies use records available in the traffic death database (VIT), in the Hospital Admission System (SIH) and in the Mortality Information System (SIM), referring to the second quarter of 2016 of a municipality participating in the PVT. The performance of the RL in the PD-PVT was then verified, through the analysis of the measures of agreement and validated to the routine of the RL performed in the Reclink. Results: The PVT is partially or fully implemented in 84.61% of the municipalities. There was an increase in the number of implemented municipalities, from eight to ten, in the years 2015 to 2017. Among the four stages of the PVT methodology, only the first is implemented. Regarding the performance of the RL in the PD-PVT, an integration between the SIH-VIT and permanent SIM-VIT bases and an excellent reliability among the evaluators (Kappa 0.95-0.98). For validation, the PD-PVT results were: Precision 1.00 (CI 1.00-1.00) for SIM-VIT; Remember 1.00 (CI 1.00-1.00) for SIH-VIT; and AUCPR 0.99 (CI 0.99-1.00) for SIH-VIT. Conclusion: This study found advances in the process of implementing the program in the years obtained, however, only the first stage is implemented in the recovered municipalities. The RL technique performed on the PD-PVT revealed excellent performance. It is worth noting that one of the great advantages of this web system is not the automated process of probabilistic matching. Therefore, it is believed that the reduction of steps makes the RL process more agile and simpler, thus enabling an incorporation of the RL technique in the service routine of the professionals involved, which should contribute to the progress of activities following the information qualification stage.

RESUMO

BACKGROUND: Linking Brazilian databases demands the development of algorithms and processes to deal with various challenges including the large size of the databases, the low number and poor quality of personal identifiers available to be compared (national security number not mandatory), and some characteristics of Brazilian names that make the linkage process prone to errors. This study aims to describe and evaluate the quality of the processes used to create an individual-linked database for data-intensive research on the impacts on health indicators of the expansion of primary care in Rio de Janeiro City, Brazil. METHODS: We created an individual-level dataset linking social benefits recipients, primary health care, hospital admission and mortality data. The databases were pre-processed, and we adopted a multiple approach strategy combining deterministic and probabilistic record linkage techniques, and an extensive clerical review of the potential matches. Relying on manual review as the gold standard, we estimated the false match (false-positive) proportion of each approach (deterministic, probabilistic, clerical review) and the missed match proportion (false-negative) of the clerical review approach. To assess the sensitivity (recall) to identifying social benefits recipients' deaths, we used their vital status registered on the primary care database as the gold standard. RESULTS: In all linkage processes, the deterministic approach identified most of the matches. However, the proportion of matches identified in each approach varied. The false match proportion was around 1% or less in almost all approaches. The missed match proportion in the clerical review approach of all linkage processes were under 3%. We estimated a recall of 93.6% (95% CI 92.8-94.3) for the linkage between social benefits recipients and mortality data. CONCLUSION: The adoption of a linkage strategy combining pre-processing routines, deterministic, and probabilistic strategies, as well as an extensive clerical review approach minimized linkage errors in the context of suboptimal data quality.

Assuntos

RESUMO

Resumo Fundamento Na prática clínica, há evidências de falhas na prescrição de terapias baseadas em evidências para pacientes de alto risco cardiovascular. Entretanto, no Brasil, ainda são insuficientes os dados sobre a evolução ao longo de 1 ano desses pacientes. Objetivos Descrição no acompanhamento de 12 meses da utilização de terapias baseadas em evidência e da ocorrência de desfechos cardiovasculares maiores e seus principais preditores em um registro brasileiro multicêntrico de pacientes de alto risco cardiovascular. Métodos Estudo observacional prospectivo que documentou a prática clínica ambulatorial de indivíduos acima de 45 anos e de alto risco cardiovascular tanto em prevenção primária como secundária. Os pacientes foram seguidos por 1 ano e avaliou-se a prescrição de terapias baseadas em evidência e a ocorrência de eventos cardiovasculares maiores (infarto agudo do miocárdio [IAM], acidente vascular cerebral [AVC], parada cardíaca e mortalidade por causa cardiovascular). Valores de p < 0,05 foram considerados estatisticamente significantes. Resultados De julho de 2010 até agosto de 2014, 5.076 indivíduos foram incluídos em 48 centros, sendo 91% dos 4.975 pacientes elegíveis acompanhados em centros de cardiologia e 68,6% em prevenção secundária. Em 1 ano, o uso concomitante de antiplaquetários, estatinas e inibidores da enzima conversora de angiotensina (IECA) reduziu de 28,3% para 24,2% (valor de p < 0,001). A taxa de eventos cardiovasculares maiores foi de 5,46%, e os preditores identificados foram: idade, pacientes em prevenção secundária e nefropatia diabética. Conclusões Neste grande registro nacional de pacientes de alto risco cardiovascular, foram identificados preditores de risco semelhantes aos registros internacionais, porém a adesão da prescrição médica a terapias baseadas em evidência esteve abaixo dos dados da literatura internacional e apresentou piora significativa em 1 ano. (Arq Bras Cardiol. 2020; [online].ahead print, PP.0-0)

Abstract Background In clinical practice, there is evidence of failure to prescribe evidence-based therapies for patients at high cardiovascular risk. However, in Brazil, data on 1-year outcomes of these patients remain insufficient. Objectives To describe the use of evidence-based therapies and the occurrence of major cardiovascular outcomes and their major predictors in a 12-month follow-up of a Brazilian multicenter registry of patients at high cardiovascular risk. Methods This prospective observational study documented the outpatient clinical practice of managing patients over 45 years of age and of high cardiovascular risk in both primary and secondary prevention. Patients were followed-up for 1 year, and the prescription of evidence-based therapies and the occurrence of major cardiovascular events (myocardial infarction, stroke, cardiac arrest, and cardiovascular death) were assessed. P-values < 0.05 were considered statistically significant. Results From July 2010 to August 2014, a total of 5076 individuals were enrolled in 48 centers, 91% of the 4975 eligible patients were followed-up in cardiology centers, and 68.6% were in secondary prevention. At 1 year, the concomitant use of antiplatelet agents, statins, and angiotensin-converting enzyme inhibitors reduced from 28.3% to 24.2% (p < 0.001). Major cardiovascular event rate was 5.46%, and the identified predictors were age, patients in secondary prevention, and diabetic nephropathy. Conclusions In this large national registry of patients at high cardiovascular risk, risk predictors similar to those of international registries were identified, but medical prescription adherence to evidence-based therapies was inferior and significantly worsened at 1 year. (Arq Bras Cardiol. 2020; [online].ahead print, PP.0-0)

Assuntos

RESUMO

BACKGROUND: Chronic obstructive pulmonary disease (COPD) has an appreciable socioeconomical impact in low- and middle-income countries, but most epidemiological data originate from high-income countries. For this reason, it is especially important to understand survival and factors associated with survival in COPD patients in these countries. OBJECTIVE: To assess survival of COPD patients in Brazil, to identify risk factors associated with overall survival, including treatment options funded by the Brazilian National Health System (SUS). METHODOLOGY: We built a retrospective cohort study of patients dispensed COPD treatment in SUS, from 2003 to 2015 using a National Database created from the record linkage of administrative databases. We further matched patients 1:1 based on sex, age and year of entry to assess the effect of the medicines on patient survival. We used the Kaplan-Meier method to estimate overall survival of patients, and Cox's model of proportional risks to assess risk factors. RESULT: Thirty seven thousand and nine hundred and thirty eight patients were included. Patient's survival rates at 1 and 10 years were 97.6% (CI 95% 97.4-97.8) and 83.1% (CI 95% 81.9-84.3), respectively. The multivariate analysis showed that male patients, over 65 years old and underweight had an increased risk of death. Therapeutic regimens containing a bronchodilator in a free dose along with a fixed-dose combination of corticosteroid and bronchodilator seem to be a protective factor when compared to other regimens. CONCLUSION: Our findings contribute to the knowledge of COPD patients' profile, survival rate and related risk factors, providing new evidence that supports the debate about pharmacological therapy and healthcare of these patients.

RESUMO

Suicide and suicide attempts are considered global health problems. With regard to the main causes of unnatural deaths, Brazil ranks as the eighth country with the highest absolute number of suicides. The aim of this study was to analyze the factors associated with the risk of suicide in a metropolitan city in Brazil. This was a cross-sectional study carried out in Recife, in the northeast region of Brazil. Epidemiological surveillance was conducted on the information systems regarding attempted suicide, suicide, and undetermined deaths in the period from 2007 to 2017. A record linkage between the information systems was performed. Descriptive statistics, bivariate analysis, and logistic regression were performed with an adopted a significance level of 5%. In the city of Recife, there were 4495 suicide attempts in the period, and the most frequent suicide attempts were by single females, aged between 20 and 39 years old, and who used either medication or poison to die by suicide. A total of 141 individuals died by suicide, and exogenous intoxication was the most common method. Knowing the common characteristics and associated factors of those who attempt and die by suicide is key for the development of prevention policies and intervention strategies for suicide.

Assuntos

RESUMO

Os estudos sobre a escravidão vêm demonstrando que o acesso ao casamento entre os cativos estava longe de constituir a regra. Aliás, mesmo para a população livre, parte dos homens e das mulheres jamais teria a sua união formalizada. Aqui explora-se o universo minoritário dos matrimônios entre escravizados realizados na freguesia Nossa Senhora da Madre de Deus de Porto Alegre, Capitania-Província do Rio Grande de São Pedro, entre 1772 e 1850, como mote para discutir a questão dos regimes demográficos restritos, tema importante da pauta da demografia histórica brasileira. As fontes principais são os assentos paroquiais de casamentos, batismos e óbitos de escravizados, analisados a partir de uma perspectiva agregada − perfil dos nubentes, naturalidade, (i)legitimidade −, assim como por meio do estudo das senzalas de dois proprietários que permitiram o casamento de escravizados. Os resultados confirmam o acesso limitado dos escravizados ao casamento formalizado, bem como indicam o impacto do tráfico nos indicadores demográficos, sobretudo a queda muito significativa da fecundidade legítima, com a entrada de escravizados adultos, especialmente a partir da segunda década do século XIX. Por fim, são analisadas duas senzalas, para exemplificar políticas senhoriais que incentivavam o casamento e a reprodução endógena.

Studies on slavery have shown that access to marriage among captives was far from the norm. In fact, even for the free population, some men and women would never have their union formalized. Here we explore the minority universe of marriages between enslaved people held in the parish of Nossa Senhora da Madre de Deus in Porto Alegre, Captaincy-Province of Rio Grande de São Pedro, between 1772 and 1850, in order to discuss the issue of restricted demographic regimes, an important issue on the agenda of Brazilian Historical Demography. The main sources are parish records of marriages, baptisms, and deaths of enslaved people, analyzed from an aggregate perspective - profile of spouses, birthplace, (il)legitimacy - as well as through the study of some owners of captive couples who had their marriage recorded in the parish. The results confirm the limited access of slaves to formalized marriage. It also points to the impact of trafficking on demographic indicators, especially the significant drop in legitimate fertility, with the entry of adult slaves, especially as of the second decade of the 19th century. Finally, we analyzed two "senzalas", to exemplify slaveholder's policies which encouraged marriage and endogenous reproduction.

Los estudios sobre la esclavitud han demostrado que el acceso al matrimonio entre los cautivos estaba lejos de ser la regla. De hecho, incluso para la población libre, gran parte de hombres y mujeres nunca formalizarían su unión. Aquí, el universo minoritario de los matrimonios entre esclavos realizados en la parroquia de Nossa Senhora da Madre de Deus en Porto Alegre, Capitanía-Provincia de Rio Grande de São Pedro, entre 1772 y 1850, se explora como lema para discutir el tema de regímenes demográficos restringidos, de importancia en la agenda de la Demografía histórica brasileña. Las principales fuentes son los registros parroquiales de matrimonios, bautismos y muertes de esclavos, analizados desde una perspectiva agregada —perfil del prometido, lugar de nacimiento, (i)legitimidad—, así como a través del estudio de dos senzalas de propietarios que permitieron el matrimonio de esclavizados. Los resultados confirman el acceso limitado de los esclavos al matrimonio formalizado. También señala el impacto del tráfico en los indicadores demográficos, especialmente la muy significativa caída de la fecundidad legítima, con la entrada de esclavos adultos, especialmente a partir de la segunda década del siglo XIX. Finalmente, analizamos dos barrios de esclavos para ejemplificar las políticas señoriales que fomentaron el matrimonio y la reproducción endógena.

Assuntos

RESUMO

BACKGROUND: In Brazil, both the Civil Registry (CR) and Ministry of Health (MoH) Mortality Information System (SIM) are sources of routine mortality data, but neither is 100% complete. Deaths from these two sources can be linked to facilitate estimation of completeness of mortality reporting and measurement of adjusted mortality indicators using generalized linear modeling (GLM). METHODS: The 2015 and 2016 CR and SIM data were linked using deterministic methods. GLM with covariates of the deceased's sex, age, state of residence, cause of death and place of death, and municipality-level education decile and population density decile, was used to estimate total deaths and completeness nationally, subnationally and by population sub-group, and to identify the characteristics of unreported deaths. The empirical completeness method and Global Burden of Disease (GBD) 2017 estimates were comparators at the national and state level. RESULTS: Completeness was 98% for SIM and 95% for CR. The vast majority of deaths in Brazil were captured by either system and 94% were reported by both sources. For each source, completeness was lowest in the north. SIM completeness was consistently high across all sub-groups while CR completeness was lowest for deaths at younger ages, outside facilities, and in the lowest deciles of municipality education and population density. There was no clear municipality-level relationship in SIM and CR completeness, suggesting minimal dependence between sources. The empirical completeness method model 1 and GBD completeness estimates were each, on average, less than three percentage points different from GLM estimates at the state level. Life expectancy was lowest in the northeast and 7.5 years higher in females than males. CONCLUSIONS: GLM using socio-economic and demographic covariates is a valuable tool to accurately estimate completeness from linked data sources. Close scrutiny of the quality of variables used to link deaths, targeted identification of unreported deaths in poorer, northern states, and closer coordination of the two systems will help Brazil achieve 100% death reporting completeness. The results also confirm the validity of the empirical completeness method.

Assuntos

RESUMO

Abstract INTRODUCTION: The increasing incidence of syphilis among pregnant women (PS) and congenital syphilis (CS) has negatively affected maternal-child health in Brazil. The spatial approach to diseases with social indicators improves knowledge of health situations. Herein, we aimed to evaluate the spatiotemporal distribution of incidences, identify the priority areas for infection control actions, and analyze the relationship of PS and CS clusters with social determinants of health in Mato Grosso. METHODS: This is an ecological study with data from different health information systems. After data procedure linkage, we analyzed the Bayesian incidences of triennial infections during specific periods. We performed SATSCAN screenings to identify spatiotemporal clusters. Further, we verified the differences between the clusters and indicators using Pearson's chi-square test. RESULTS: The variations in PS incidence were 0.9-20.5/1,000 live births (LB), 0.6-46.3/1,000 LB, and 2.1-23.2/1,000 LB in the first, second, and last triennium, respectively; for CS, the variations were 0-7.1/1,000 LB, 0-7.5/1,000 LB, and 0.3-10.8/1,000 LB in the first, second, and last triennium, respectively. Three clusters each were identified for PS (RR=2.02; RR=0.30; RR=21.45, p<0.0001) and CS (RR=3.55; RR=0.10; RR=0.26, p<0.0001). The high-risk clusters overlapped in time-space; CS incidence was associated with municipalities with a higher proportion of LB mothers of race/non-white color and with poor sanitary conditions, lower proportion of pregnant teenagers, and under 8 years of schooling. CONCLUSIONS: The increase in the spatiotemporal evolution of PS and CS incidences and the extension of areas with persistent infections indicate the need for monitoring, especially of priority areas in the state.

Assuntos

RESUMO

Based on the Constitution, the Population Census in Austria is a matter of the central state, serving many political-administrative, planning, research, and other purposes. After its start as a systematic operation in the middle of the 18th century, it developed further by a modern legal basis in 1857 and advances in statistical technology in 1890 (punch cards) and 1971 (machine-readable questionnaires). In the second half of the 20th century, the Population Census became a comprehensive operation, including dwellings, buildings, and workplaces. The communes organized the classical method of on the spot household data collection on behalf of the state. The register-based Census replaced the household collection in 2011. Following a government decision of 2000, which aimed at the sole use of available micro-data, the first steps for creating the necessary administrative and statistical registers took place in conjunction with the last traditional census of 2001. With new provisions for linking the records, the Register Census Act of 2006, and a full test census in the same year, the new methodology was established and evaluated in a short period. The first regular Register Census "took place" with reference date 31 October 2011. It is described in the central part of this communication, featuring the advantages, strengths, and weaknesses, the backbone registers, the "comparison registers," and the redundancy principle, which help to ensure high data quality and the fit of the census into the international framework. Current developments include the annual update of results, changes and improvements in the data sources, and a short outlook on the next census of 2021.

Baseado na Constituição, o Censo Populacional na Áustria é uma questão do governo central e serve a muitos propósitos político-administrativos, de planejamento e pesquisa, entre outros. Após seu início, como uma operação sistemática, em meados do século XVIII, ele foi aperfeiçoado devido a uma nova base legal, em 1857, e aos avanços na tecnologia estatística, em 1890 (cartões perfurados) e 1971 (questionários lidos por máquinas). Na segunda metade do século XX, o censo populacional tornou-se uma operação abrangente, incluindo habitações, domicílios e locais de trabalho. O método clássico de coleta de dados no próprio domicílio, organizado pelos municípios em nome do Estado, foi substituído pelo censo baseado em registros, em 2011. Seguindo uma decisão governamental de 2000, cujo objetivo era o uso exclusivo dos microdados disponíveis, os primeiros passos para a criação dos registros administrativos e estatísticos necessários ocorreu conjuntamente com o último censo tradicional, de 2001. Com novas disposições para parear os registros, a Lei do Censo de Registros de 2006 e um censo- -teste completo no mesmo ano, a nova metodologia foi definida e avaliada em um curto período. O primeiro censo de registro teve como referência 31 de outubro de 2011. Sua descrição, na parte principal deste texto, apresenta as vantagens, os pontos fortes e fracos, os registros mais relevantes ("espinha dorsal"), os registros de comparação e o princípio da redundância, que ajudam a manter a qualidade dos dados e adequação do censo ao arcabouço internacional. Desenvolvimentos atuais incluem atualizações anuais dos resultados, mudanças e melhorias nas fontes de dados. É apresentado, também, um breve panorama do próximo censo, em 2021.

Sobre la base de la Constitución el censo de población es un asunto estatal central en Austria, con arreglo a diversos fines politicoadministrativos, de planificación e investigación, entre otros. Luego de haber comenzado como operación sistemática a mediados del siglo XVIII, se desarrolló luego como sobre bases legales modernas en 1857 y avanzó en tecnología estadística en 1890 (tarjetas perforadas) y en 1971 (cuestionarios legibles por máquinas). En la segunda mitad del siglo XX el censo de población se convirtió en una operación integral que incluyó vivienda, edificios y lugares de trabajo. El método clásico de recolección de datos en el punto en los hogares, organizado por las comunas a expensas del Estado, fue reemplazado por el censo basado en registro de 2011. A consecuencia de una decisión de gobierno del año 2000, que tenía como objetivo el uso exclusivo de los microdatos disponibles, el primer paso para la creación de los registros administrativos y estadísticos necesarios se llevó a cabo junto con el último censo de tipo tradicional de 2001. Con nuevas provisiones para vincular los registros, el Acto de Registro del Censo de 3006 y una prueba completa de censo en el mismo año, la nueva metodología se estableció y evaluó en un período muy corto. El primer censo de registro regular «tuvo lugar¼ con datos de referencia el 31 de octubre de 2011. Es descripto en la parte principal de su comunicación, donde se presentan sus ventajas, fortalezas y debilidades, así como sus registros principales, los registros «de comparación¼ y el principio de redundancia, que ayudan a asegurar datos de alta calidad y el ajuste del censo al marco de referencia internacional. Hoy, los desarrollos incluyen la actualización anual de los resultados, los cambios y mejoras en las fuentes de datos y una breve mirada hacia el nuevo censo de 2021.

Assuntos

RESUMO

Introdução: A necessidade de monitorar o intervalo entre o diagnóstico de uma neoplasia maligna e o início do tratamento oncológico no Sistema Público de Saúde demandou a construção de uma nova ferramenta. Para tanto, foi desenvolvido o PAINEL-Oncologia. Objetivo: Apresentar o processo de elaboração da ferramenta, suas aplicações, potencialidades e limites, apontando ainda perspectivas futuras. Método: O painel foi construído a partir do relacionamento determinístico de informações diagnósticas e de tratamento obtidas no Sistema de Informação Ambulatorial, por meio do Boletim de Produção Ambulatorial Individualizado e da Autorização de Procedimento de Alta Complexidade, no Sistema de Informação Hospitalar e no Sistema de Informações de Câncer, utilizando-se o Cartão Nacional de Saúde e o diagnóstico de neoplasia como chave identificadora do caso. Resultados: A ferramenta disponibiliza três painéis: 1 - Painel: Monitoramento do início do tratamento oncológico, que exclui os cânceres de pele não melanoma e tireoide; 2 - Painel: Casos sem data de diagnóstico por ano de tratamento; e 3 - Painel: Casos diagnosticados de câncer de pele não melanoma e tireoide; e um conjunto de gráficos e tabelas com filtros para seleção. Conclusão: O PAINEL-Oncologia foi disponibilizado aos gestores e a órgãos de controle em 15 de maio de 2019. Trata-se de uma ferramenta ágil e acessível ao gestor para o monitoramento do tempo do primeiro tratamento do câncer. Contudo, as informações apresentadas no PAINEL-Oncologia dependem do registro e da qualidade das informações dos Sistemas de Informação em Saúde dos quais ele consome informações

Introduction: It was necessary to construct a new tool to monitor the interval between the diagnosis of a malignant neoplasm and the beginning of cancer treatment in the Public Health System. For this purpose, the Oncology-PANEL was developed. Objective: To introduce the process of elaboration of the tool, its applications, potentialities and limits, with its future perspectives. Method: The panel was built from the deterministic relationship of diagnostic and treatment information obtained from the Outpatient Information System, through the Individualized Outpatient Production and the High Complexity Procedure Authorization, in the Hospital Information System and the Cancer Information System, using the National Health Card and the diagnosis of cancer as identification key of the case. Result: The tool has three panels: 1st. Panel: Monitoring the initiation of the cancer treatment which excludes non-melanoma and thyroid skin cancers; 2nd Panel: Cases without date of diagnosis by year of treatment, and 3rd. Panel: Cases diagnosed with non-melanoma and thyroid skin cancer; and a set of charts and tables with selection filters. Conclusion: Oncology-PANEL was available to managers and control agencies on May 15, 2019. It is an agile and manager-accessible tool for monitoring the time of the first cancer treatment. However, the information presented in the Oncology-PANEL depend on the registration and the quality of the information of the Health Information Systems from which the data are obtained.

Introducción: La necesidad de controlar el intervalo entre diagnóstico de una neoplasia maligna y el comienzo del tratamiento del cáncer en el Sistema de Salud Pública exigió la construcción de una nueva herramienta. Para este propósito, se desarrolló el PANEL-oncología. Objetivo: Presentar el proceso de elaboración de la herramienta, sus aplicaciones, potencialidades y límites, señalando perspectivas futuras. Método: El panel se construyó a partir de relación determinista de información de diagnóstico y tratamiento obtenida del Sistema de información para pacientes ambulatorios, a través del Boletín de producción ambulatoria individualizado y Autorización de procedimiento de alta complejidad, Sistema de información hospitalaria y Sistema de información sobre el cáncer, utilizando la Tarjeta nacional de salud y diagnóstico de cáncer como clave de identificación del caso. Resultados: La herramienta tiene tres paneles: 1 - Panel: Monitoreo del inicio del tratamiento del cáncer, que excluye los cánceres de piel no melanoma y de tiroides; 2 - Panel: Casos sin fecha de diagnóstico por año de tratamiento, 3 - Panel: Casos diagnosticados con cáncer de piel no tiroideo y melanoma; y un conjunto de gráficos y tablas con filtros para la selección. Conclusión: PANEL-Oncología se puso a disposición de los gerentes y las agencias de control el 15 de mayo de 2019. Es una herramienta ágil y accesible para los gerentes para monitorear el momento del primer tratamiento contra el cáncer. Sin embargo, la información presentada en el PANEL-Oncología depende del registro y la calidad de información de los Sistemas de la Información de Salud de los cuales consume información.

Assuntos

RESUMO

Health technology assessment (HTA) is the systematic evaluation of the properties and impacts of health technologies and interventions. In this article, we presented a discussion of HTA and its evolution in Brazil, as well as a description of secondary data sources available in Brazil with potential applications to generate evidence for HTA and policy decisions. Furthermore, we highlighted record linkage, ongoing record linkage initiatives in Brazil, and the main linkage tools developed and/or used in Brazilian data. Finally, we discussed the challenges and opportunities of using secondary data for research in the Brazilian context. In conclusion, we emphasized the availability of high quality data and an open, modern attitude toward the use of data for research and policy. This is supported by a rigorous but enabling legal framework that will allow the conduct of large-scale observational studies to evaluate clinical, economical, and social impacts of health technologies and social policies.

RESUMO

Heart failure is considered a garbage code when assigned as the underlying cause of death. Reassigning garbage codes to plausible causes reduces bias and increases comparability of mortality data. Two redistribution methods were applied to Brazilian data, from 2008 to 2012, for decedents aged 55 years and older. In the multiple causes of death method, heart failure deaths were redistributed based on the proportion of underlying causes found in matched deaths that had heart failure listed as an intermediate cause. In the hospitalization data method, heart failure deaths were redistributed based on data from the decedents' corresponding hospitalization record. There were 123,269 (3.7%) heart failure deaths. The method with multiple causes of death redistributed 25.3% to hypertensive heart and kidney diseases, 22.6% to coronary heart diseases and 9.6% to diabetes. The total of 41,324 heart failure deaths were linked to hospitalization records. Heart failure was listed as the principal diagnosis in 45.8% of the corresponding hospitalization records. For those, no redistribution occurred. For the remaining ones, the hospitalization data method redistributed 21.2% to a group with other (non-cardiac) diseases, 6.5% to lower respiratory infections and 9.3% to other garbage codes. Heart failure is a frequently used garbage code in Brazil. We used two redistribution methods, which were straightforwardly applied but led to different results. These methods need to be validated, which can be done in the wake of a recent national study that will investigate a big sample of hospital deaths with garbage codes listed as underlying causes.

A insuficiência cardíaca, quando atribuída como a causa básica de morte, é considerada um código lixo. A reatribuição de códigos lixo a causas plausíveis tem por objetivo reduzir viés e aumentar a comparabilidade de dados sobre mortalidade. Dois modelos de redistribuição foram aplicados a dados brasileiros de 2008 a 2012, para pacientes falecidos de 55 anos de idade ou mais. No modelo de causas múltiplas de morte, óbitos por insuficiência cardíaca foram redistribuídos com base na proporção de causas básicas identificadas em óbitos pareados que tinham insuficiência cardíaca listada como causa intermediária. No método de dados hospitalares, óbitos por insuficiência cardíaca foram redistribuídos com base nos dados dos registros de hospitalização dos pacientes falecidos. Houve 123.269 (3,7%) óbitos por insuficiência cardíaca. O método de causas múltiplas de morte redistribuiu 25,3% para doenças cardíacas hipertensivas e doenças renais, 22,6% para doenças cardíacas coronarianas e 9,6% para diabetes. Houve 41.324 óbitos por insuficiência cardíaca relacionados com registros de hospitalização. A insuficiência cardíaca foi listada como o diagnóstico principal em 45,8% dos registros de hospitalização correspondentes. Para estes, não foi feita redistribuição. Para os óbitos remanescentes, o método de dados hospitalares redistribuiu 21,2% para outras doenças (não cardíacas), 6,5% para infecções das vias aéreas inferiores e 9,3% para outros códigos lixo. A insuficiência cardíaca é um código lixo frequentemente usado no Brasil. Nós usamos dois métodos de redistribuição, aplicados de forma simples, mas que levaram a resultados distintos. É importante que esses métodos sejam validados, o que pode ser feito a partir de um estudo nacional recente que investigará uma grande amostra de óbitos hospitalares com códigos lixo listados como causas básicas.

El fallo cardíaco, cuando es asignado como causa subyacente de la muerte está considerado como código basura. El objetivo de este estudio es reasignar códigos basura de fallecimiento, con el fin de reducir sesgos e incrementar la comparabilidad de los datos de mortalidad. Se aplicaron dos métodos de redistribución en los datos brasileños de 2008 a 2012, para fallecidos de 55 años y mayores. En el método de causas múltiples de muerte, las muertes por fallo cardiaco fueron redistribuidas basándose en la proporción de causas subyacentes encontradas en las muertes compatibles que contaban con un fallo cardiaco descrito como causa intermedia. En el método de datos de hospitalización, las muertes por fallo cardiaco fueron redistribuidas basándose en datos del historial de hospitalización de los fallecimientos. Hubo 123.269 (3,7%) muertes por fallo cardíaco. El método de múltiples causas de fallecimiento redistribuyó un 25,3% a problemas de hipertensión cardiaca y enfermedades de riñón, un 22,6% a enfermedades coronarias de corazón y un 9,6% a diabetes. Hubo 41.324 muertes por fallos cardiacos vinculadas a los registros de hospitalización. El fallo cardíaco fue listado como diagnóstico principal en un 45,8% de los registros de hospitalización correspondientes. Para estos últimos, no se produjo redistribución. En el caso de los restantes, el método de datos de hospitalización redistribuyó un 21,2% a un grupo con otras enfermedades (no-cardíacas), un 6,5% a infecciones en las vías respiratorias bajas y un 9,3% a otros códigos basura. El fallo cardíaco es frecuentemente usado en Brasil como código basura. Usamos dos métodos de redistribución, que fueron directamente aplicados, pero que condujeron a resultados diferentes. Es importante validar estos métodos, que como consecuencia de un estudio nacional recientemente iniciado es posible que se pueda hacer, además de investigar una gran muestra de muertes hospitalarias registradas con códigos basura procedentes de causas subyacentes.

Assuntos