Registry Evaluation Methods: A Review and Case Study1

Goldberg, Jack; Gelfand, Henry M.; Levy, Paul S.

doi:10.1093/oxfordjournals.epirev.a036224

Cited by 128 publications

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“…Entre eles, citam-se subnotificação, atraso nas notificações e digitação dos dados, problemas no processamento e transferência das informações e a ausência de uma retroalimentação adequada à fonte notificadora, gerando desestímulo e descontinuidade do processo. 9 Portanto, o presente trabalho tem por objetivo avaliar a qualidade dos dados de vigilância da dengue, verificando sua sensibilidade e valor preditivo positivo (VPP) na detecção de casos de dengue internados em hospitais do Sistema Único de Saúde (SUS) e possíveis fatores associados ao sub-registro. Os parâmetros laboratoriais adotados para classificação das variáveis anemia, leucopenia, hipoprotrombinemia, hipoalbuminemia foram os padronizados na literatura.…”

Section: Introductionunclassified

Qualidade dos dados da vigilância epidemiológica da dengue em Belo Horizonte, MG

Duarte

França

2006

Rev. Saúde Pública

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OBJETIVO: Avaliar a qualidade dos dados do sistema de vigilância epidemiológica na detecção de casos suspeitos de dengue internados em hospitais públicos e conveniados do Sistema Único de Saúde. MÉTODOS: O estudo foi realizado em Belo Horizonte, Estado de Minas Gerais, no período de 1996 a junho de 2002. Foram adotados os critérios de avaliação de qualidade dos dados de vigilância da dengue do Guidelines for Evaluating Public Health Surveillance Systems. Como padrão de referência foram utilizados os prontuários médicos revisados e validados dos pacientes internados e registrados na rede hospitalar do sistema público de saúde. Foram obtidos 266 (90%) do total de 294 prontuários selecionados, 230 (86,5%) preencheram o critério de caso suspeito de dengue. Para verificar associação entre o sub-registro e variáveis selecionadas, utilizou-se o odds ratio com intervalo de confiança de 95% em modelo de regressão logística. Para avaliar a sensibilidade do sistema de notificação, utilizou-se a proporção de casos internados no sistema hospitalar que estavam notificados; para o valor preditivo positivo, utilizou-se a proporção de casos confirmados por laboratório e registrados no sistema de notificação. RESULTADOS: Verificou-se sub-registro de 37% dos casos no período de 1997 a 2002, com cinco vezes mais chances de ocorrência nos três primeiros anos (OR=5,93; IC 95%: 2,50-14,04), oito vezes mais nas internações em hospitais conveniados que naqueles públicos (OR=8,42, IC 95%: 2,26-31,27). O sub-registro associou-se também aos casos clínicos internados sem manifestações hemorrágicas (OR=2,81; IC 95%: 1,28-6,15), e sem exames laboratoriais específicos para dengue no prontuário (OR=4,07; IC 95%: 1,00-16,52). A sensibilidade estimada do sistema de notificação foi de 63% e o valor preditivo positivo foi de 43%. CONCLUSÕES: Os casos de dengue registrados no sistema de notificação foram aqueles de evolução mais grave e não representaram a totalidade de casos internados no sistema público de saúde, superestimando a taxa de letalidade da doença. Os resultados indicam a necessidade de mudanças no modelo da vigilância e de implementação da capacitação dos profissionais de saúde, principalmente aqueles que trabalham em hospitais conveniados.

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Section: Introductionunclassified

Qualidade dos dados da vigilância epidemiológica da dengue em Belo Horizonte, MG

Duarte

França

2006

Rev. Saúde Pública

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“…Exhaustive ascertainment of all cases can rarely be achieved, however, on the population level. Therefore, attempts to quantify the degree of underascertainment are essential for proper interpretation of cancer registry data.Various approaches have been proposed to quantify incompleteness of population-based cancer registration (Freedman, 1978;Goldberg et al, 1980;Benn et al, 1982;Devesa et al, 1984;Shanmugaratnam, 1989;Jensen et al, 1991;Parkin et al, 1992). A particularly widely used indirect measure of incompleteness is the death certificate only index (DCO index) which quantifies the proportion of cases for whom the death certificate is the only source of notification.…”

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confidence: 99%

“…The conceptually simplest and most definitive method to check completeness of cancer registration is to identify a series of cases from an independent source, e.g. lists of probands in clinical trials or other research studies, and to assess how many have been registered (Goldberg et al, 1980;Nwene and Smith, 1982;Mattson et al, 1985;Hunt and Coleman, 1987;Villard-Mackintosh et al, 1988;Swerdlow et al, 1993;Schouten et al, 1993). Such independent lists are often unavailable, however.…”

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Limitations of the death certificate only index as a measure of incompleteness of cancer registration

Brenner

1995

Br J Cancer

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Summary The death certificate only (DCO) index, which quantifies the proportion of patients for whom the death certificate provides the only notification to the registry, is a widely used measure of incompleteness of population-based cancer registration. This paper provides an algebraic assessment and a quantitative illustration of the relationship between the DCO index and incompleteness of cancer registration. It is shown that the relationship between the DCO index and incompleteness of registration is strongly dependent on the case fatality rate and the misclassification rates of cancer deaths among unregistered patients. Therefore, the DCO index is a very poor indicator of incompleteness. Similar limitations apply to the DCN index (proportion of cases first notified by death certificate), which has been proposed as an alternative measure of incompleteness.Keywords: death certificate; cancer registry; disease surveillance; epidemiological method Population-based cancer registries are most valuable tools of both descriptive and analytical cancer epidemiology. Exhaustive ascertainment of all cases can rarely be achieved, however, on the population level. Therefore, attempts to quantify the degree of underascertainment are essential for proper interpretation of cancer registry data.Various approaches have been proposed to quantify incompleteness of population-based cancer registration (Freedman, 1978;Goldberg et al., 1980;Benn et al., 1982;Devesa et al., 1984;Shanmugaratnam, 1989;Jensen et al., 1991;Parkin et al., 1992). A particularly widely used indirect measure of incompleteness is the death certificate only index (DCO index) which quantifies the proportion of cases for whom the death certificate is the only source of notification. For example, the DCO index is routinely reported as an indicator of incompleteness in international cancer incidence statistics published by the International Agency for Research on Cancer (Parkin et al., 1992).One of the major reasons for the popularity of the DCO index is its ease of calculation in situations in which death certificates are routinely linked with registry data. Nevertheless, the DCO index has a variety of limitations, the best known being its dependence on case fatality rates: poor completeness may go along with a low DCO index for cancers which have low case fatality rates. Another major limitation of the DCO index is its sensitivity to the welldocumented inaccuracies of the certified causes of death (Barclay and Phillips, 1962;De Faire et al., 1976;Percy et al., 1981). As an example, endometrial cancer is often misclassified as cervical cancer, and vice versa, on death certificates, and similar misclassification problems have also been documented for other cancers, such as colon and rectum cancer (Percy et al., 1981). Furthermore, non-specific codes, such as cancer of unknown site, are frequently used on death certificates, and cancer often remains undetected as the underlying cause of death among elderly patients. While these limitations have been widely recogn...

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“…They included the title of the registry system, year of implementation, country of origin, current status of the system, main objectives based on use (29), type of data sources (30), minimum data set (MDS) (31), and data quality (32).The validity of this checklist in extracting main data items in the registries was assessed by 2 independent researchers. Based on the current study aims and objectives, only the qualitative variables from the included studies were extracted ( Table 1).…”

Section: Data Extractionmentioning

confidence: 99%

A Global Comparison of Dementia and Alzheimer Disease Registries: A Systematic Review

Sarsarshahi

Ahmadi

Niazkhani

2017

Iran Red Crescent Med J

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Context: Population aging is one of the most important health concerns worldwide, leading to an increase in the prevalence of chronic diseases such as dementia and Alzheimer disease (AD). Disease registries have great potential to determine the effect of clinical care, healthcare costs, and healthcare improvement for patients. Although there are several registries for dementia and AD worldwide, no systematic review is so far performed in this area. Therefore, the current study aimed at identifying the basic information in dementia and AD registries and comparing their characteristics.Evidence Acquisition: The current systematic review studied the dementia and AD registries in English literature based on keywords in the title with no time limitations, using the following databases: Institute of Electrical and Electronics Engineers (IEEE), ProQuest, PubMed, Science Direct, Web of Science, Scopus, Ovid Medline, Scientific Information Database (SID), and IranMedex (earliest entry to 07 February, 2017). In the current research, only the studies related to disease registries were evaluated.Results: A total of 28 articles meeting the inclusion criteria were evaluated in the current study. Based on the findings, 22 dementia and AD registries were identified. The majority of the registries (13 registries) were from North America. In half of the registries, patient recruitment was performed among outpatients and inpatients referred to healthcare centers. The comparison of the structural information in these registry systems showed that they differed in terms of objectives, data sources, minimum data sets, and data quality. Conclusions:The current study was the 1st systematic review of dementia and AD registries. Since there are no international standards to develop dementia and AD registries, comprehensive analysis can be effective to promote disease registry systems.Keywords: Dementia, Alzheimer Disease, Registries, Database ContextA disease registry is an organized system in which uniform data (clinical and nonclinical) are gathered to assess the outcomes in a given population with a particular disease, condition, or exposure to disease (1). Use of registry systems can provide a better understanding of the natural history of a disease and offer treatment instructions for patients and organizations (2). Analysis of the registered data in these systems can be used to present activity reports, propose research hypotheses, and improve patient care (3).Population aging is one of the most important health concerns worldwide, associated with certain consequences, outcomes, and costs (4). As a result, healthcare systems require effective strategies to improve the process of healthcare provision to meet the needs of the elderly (5). Increased life expectancy and significant growth in the elderly population are associated with increased prevalence of chronic diseases such as dementia (6).Alzheimer disease (AD) is one of the most common causes of dementia in people aged over 65 years (7). AD is a degenerative disease that ...

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Registry Evaluation Methods: A Review and Case Study1

Cited by 128 publications

References 0 publications

Qualidade dos dados da vigilância epidemiológica da dengue em Belo Horizonte, MG

Qualidade dos dados da vigilância epidemiológica da dengue em Belo Horizonte, MG

Limitations of the death certificate only index as a measure of incompleteness of cancer registration

A Global Comparison of Dementia and Alzheimer Disease Registries: A Systematic Review

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