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Methods for defining equity-stratifying variables: a systematic review of validation studies.

BACKGROUND AND OBJECTIVE: Disease burden is often disproportionally higher among those who are socially disadvantaged by factors defined in the PROGRESS-Plus framework (ie, Place of residence, Race/ethnicity/culture/language, Occupation, Gender/sex, Religion, Education, Socioeconomic status, and Social capital, with "Plus" covering features like age and disability). The accuracy and applicability of case definitions to identify these variables from administrative and clinical health data are unknown. We conducted a systematic review to explore how equity-stratifying variables, as categorized by the PROGRESS-Plus framework, have been defined and validated in epidemiologic studies using administrative health, population-level, or electronic health record (EHR) data. METHODS: Medline, EMBASE, CINAHL, Web of Science, and Google Scholar were searched from the inception of the databases to 2024 for validation studies of equity-stratifying variables in adults using administrative health datasets, health registries, or EHR data. Titles and abstracts, followed by relevant full-text articles, were screened in duplicate by two reviewers for eligibility. The data sources utilized, algorithms employed, and their associated performance measures were extracted and synthesized from included studies. Given substantial heterogeneity in study design, equity-stratifying variable definition, and performance metrics, meta-analysis was not possible. RESULTS: Of the 9099 unique citations screened, 188 full texts were reviewed and 116 were included in this review. Most studies were published between 2019 and 2024 (n = 64, 55%) and were validation studies of race/ethnicity definitions that used race/ethnicity codes or surname list algorithms (n = 66, 57%). No studies examined religion. Regarding the reported performance measure estimates, the race/ethnicity/culture/language equity-stratifying variables category had the largest variability across sensitivity, positive predictive value (PPV), and Cohen's Kappa. Occupation validation studies had the lowest variation in sensitivity and PPV. CONCLUSION: Despite an increasing number of publications reporting on the validation of equity-stratifying variables relevant to the PROGRESS-Plus framework, performance measures varied widely across studies. The significant heterogeneity in equity-stratifying variable definitions and methods used to validate them support the need for further rigorous validation of equity-stratifying variables in administrative and clinical health data. PLAIN LANGUAGE SUMMARY: Disease burden is often higher in people who experience financial hardships, lower level of education, discrimination due to race/ethnicity, and unstable housing. These social factors can be considered health equity factors and are important for understanding health inequalities. Health researchers often use large datasets, such as hospital or electronic health records (EHRs), to study these health equity factors. However, it is not clear how accurately these data sources capture information about people's social circumstances and how these factors are defined. In this study, we reviewed existing research to understand how health equity factors have been defined across health data sources and how accurate they are at measuring aspects of health equity and social disadvantage. Of the more than 9000 studies we identified, we included 116 that met our criteria for this systematic review. Most included studies focused on identifying race and ethnicity, often using codes or surname-based methods. We found that the accuracy of these methods varied widely across studies, meaning results may not always be reliable or comparable. Overall, our findings show that there are inconsistencies in how social factors are defined and measured in health data. This makes it difficult to fully understand and address health inequalities using routinely collected health data. More work is needed to develop and validate better quality and more consistent methods for capturing these important social factors.

Humans↗

The impact of nonclinical factors on practice variations: the case of hysterectomies.

OBJECTIVE: This study investigates the role of nonclinical factors (physician characteristics) in explaining variations in hysterectomy practice patterns. DATA SOURCES AND STUDY SETTING: Patient discharge data are obtained from the Arizona state discharge database for the years 1989-1991. Physician data are obtained from the Arizona State Medical Association. The analyses are based on 36,104 cases performed by 339 physicians in 43 hospitals. STUDY DESIGN: This article measures the impact of physician factors on the decision to perform a hysterectomy, controlling for a host of patient and hospital characteristics. Physician factors include background characteristics and training, medical experience, and physician's practice style. Physician effects are evaluated in terms of their overall contribution to the explanatory power of regression models, as well as in terms of specific hypotheses to be tested. DATA COLLECTION: The sources of data were linked to produce one record per patient. PRINCIPAL FINDINGS: As a set, physician factors account for a statistically significant increase in the explanatory power of the model after addition of patient and hospital effects. Parameter estimates provide further support for the hypothesized effects of physicians' background, experience, and practice characteristics. CONCLUSIONS: Overall, the results confirm that nonclinical (physician) factors play a statistically significant role in the hysterectomy decision. Substantively, however, these factors play a smaller, secondary role compared to that of clinical and patient factors in explaining practice variations in hysterectomies. The results suggest that efforts to reduce unnecessary hysterectomies should be directed at identifying the appropriate clinical indications for hysterectomy and disseminating this information to physicians and patients. This may require such intervention strategies as continuing clinical education, promulgation of explicit practice guidelines, peer review, public education, and greater understanding and inclusion of patient preference in the decision process.

Adult↗

Enhanced surveillance of meningococcal disease in the West Midlands: 1996 to 1998.

Surveillance of meningococcal disease is vital if we are to respond to a changing burden of disease, but current sources of routine data suggest different trends. A scheme for enhanced surveillance of meningococcal disease began in the West Midlands in January 1996 using several data sources, including case reporting from consultants in communicable disease control, data from the PHLS Meningococcal Reference Unit, and monitoring of statutory notifications and laboratory reports. One thousand two hundred and twenty-eight cases of probable meningococcal infection were identified in three years (1996-1998), 594 of which were laboratory confirmed. Routine data for the same period yielded smaller totals--920 notifications and 412 laboratory reports--suggesting that these sources underestimate incidence by 25% to 30%. Diagnosis by polymerase chain reaction became increasingly important, and accounted for 38% of confirmed cases in 1998. A significant excess of male cases was observed (p < 0.01), most obvious in children under 5 years of age. There was no increase in N. meningitidis C2a strains, which had been identified as a threat nationally. A national system of enhanced surveillance has now been set up to inform programmes that aim to reduce the burden of meningococcal infection.

Adolescent↗

[Work absenteeism data--a source of information for epidemiological research in occupational risks?].

The usefulness of data on absence from work due to sickness (absenteeism) as an indicator of specific and detailed information of diagnoses is widely discussed in the international literature. In occupational health indicators for health risks (e g sickness absence of more than 14 days), details on diagnosis and workplace are very useful, if analysed by epidemiological means. A pilot project, initiated by a high sickness absence in the automobile industry, led to a test of an industrial health information system, which was abruptly stopped by data protection arguments. The epidemiologic approach of an age-adjusted comparison of incidences relies on the access to morbidity data of the health insurance system. With the diagnostic information at hand differences of incidences in one production branch (as recognized by the incidence ratio SIR) are to be discovered if related to certain specific diagnoses. Thus, a direct comparison of comparable rates helps to identify specific reasons for increased absence from work. Practical solutions were found if the owner of the data, the National Federation of Enterprise Sickness Funds, conducted the analyses. First results showed as yet unknown associations of myocardial infarction and obstructive lung diseases in the metallurgical industry. In such cases not only the validity of such results has to be verified, but also other epidemiological tools, such as a case-referent approach to determine risk ratios, are required for the identification of any causally important relationship.

Absenteeism↗

Recombinant human activated protein C for use in severe sepsis.

OBJECTIVE: To review the efficacy and safety of drotrecogin alfa (recombinant human activated protein C) in the treatment of sepsis. DATA SOURCES: Literature was identified through a MEDLINE search (1966-January 2002), the product manufacturer, and the Food and Drug Administration. STUDY SELECTION/DATA EXTRACTION: All relevant information identified from the data sources was evaluated. DATA SYNTHESIS: Drotrecogin alfa reduces coagulation and inflammation in septic patients. A large placebo-controlled clinical trial (n = 1690) of drotrecogin alfa in severely septic patients demonstrated a reduction in mortality (24.7% vs. 30.8%; p = 0.005), with increased bleeding risks (24.9% vs. 17.7%; p <0.001). Patients with more severe sepsis appeared to gain the most benefit. The complete clinical and economic impact of this agent requires further analysis. CONCLUSIONS: Drotrecogin alfa offers a significant advance in the treatment of severe sepsis. Judicious use in appropriate patients is necessary to control cost and maximize clinical benefits.

Clinical Trials as Topic↗

Efficacy and safety of St. John's wort for the treatment of major depression.

OBJECTIVE: Extracts of St. John's wort have been widely used in the treatment of depression. Our aim was to review information related to the efficacy and safety of St. John's wort as an antidepressant. DATA SOURCES: Primary and review articles were identified by a search of Medline (1960 to February 2000) and through secondary sources. STUDY SELECTION: All the articles identified from the data sources were evaluated and all relevant information was included in this review. The pharmacokinetics, mechanism of action, efficacy, side effects and drug interactions of St. John's wort have been examined in various studies. CONCLUSION: St. John's wort is a promising investigational antidepressant, but the data are not yet sufficient to accept hypericum as a first line antidepressant preparation for treatment of depression. Besides the need for dose standardization and adequate trial lengths, there is a need for studies in severely depressed patients and long-term studies to assess the risk of relapse and recurrence.

Antidepressive Agents↗

Predicting nursing facility residents' quality of life using external indicators.

PURPOSE: A newly developed brief measure of nursing facility (NF) resident self-reported quality of life (QOL) has been proposed for inclusion in a modified version of the minimum data set (MDS). There is considerable interest in determining whether it is possible to develop indicators of QOL that are more convenient and less expensive than direct, in-person interviews with residents. DESIGN AND METHODS: QOL interview data from 2,829 residents living in 101 NFs using a 14-item version of a longer instrument were merged with data from the MDS and the Online Survey and Certification Automated Record (OSCAR). Bivariate and multivariate hierarchical linear modeling were used to assess the association of QOL with potential resident and facility level indicators. RESULTS: Resident and facility level indicators were associated with self-reported QOL in the expected direction. At the individual resident level, QOL is negatively associated with physical function, visual acuity, continence, being bedfast, depression, conflict in relationships, and positively associated with social engagement. At the facility level, QOL is negatively associated with citations for failing to accommodate resident needs or providing a clean, safe environment. The ratio of activities staff to residents is positively associated with QOL. This study did not find an association between QOL and either use of restraints or nurse staff levels. Approximately 9 percent of the total variance in self-reported QOL can be attributed to differences among facilities; 91 percent can be attributed to differences among residents. Resident level indicators explained about 4 percent of the variance attributable to differences among residents, and facility factors explained 49 percent of the variance attributable to differences among NFs. However, the different variables explained only 10 percent of the variance in self-reported QOL. IMPLICATIONS: A brief self-report measure of NF resident QOL is consistently associated with measures that can be constructed from extant data sources. However, the level of prediction possible from these data sources does not justify reliance on external indicators of resident QOL for policy purposes.

Aged↗

Coinsurance effects on dental prices.

For many Americans the cost of dental services represents a barrier to receiving regular dental care and maintaining proper oral health. The recent growth of the dental insurance industry, however, may partly offset this price barrier among insureds. Our purpose is to examine the relationship between coinsurance and dental prices for 16 dental services among a sample of Pennsylvania Blue Shield (PBS) adult insureds. The dependent price measure is the annual average gross price paid for 16 specific preventive, restorative, periodontic, endodontic, prosthodontic, and surgical dental services. Independent variables in the price model include the insured's age, education, coinsurance rates, time costs, market area, non-wage income, oral health status, area dentist-population ratio and usual source of care. Data sources are 1980 PBS claims and coinsurance rate data and a mail survey of sampled insureds. OLS regression analysis reveals that the model's independent variables explain little dental price variation. No variable is consistently significant across services, but market area, coinsurance rates, and time costs alternately dominate across equations. These results suggest that, among adult insureds, coinsurance and time costs influence dental fees in a minority of dental services. Insurance reduces the patient's sensitivity to money price, and non-price factors correspondingly seem to become more important in patient search.

Adolescent↗

Gene function classification using Bayesian models with hierarchy-based priors.

BACKGROUND: We investigate whether annotation of gene function can be improved using a classification scheme that is aware that functional classes are organized in a hierarchy. The classifiers look at phylogenic descriptors, sequence based attributes, and predicted secondary structure. We discuss three Bayesian models and compare their performance in terms of predictive accuracy. These models are the ordinary multinomial logit (MNL) model, a hierarchical model based on a set of nested MNL models, and an MNL model with a prior that introduces correlations between the parameters for classes that are nearby in the hierarchy. We also provide a new scheme for combining different sources of information. We use these models to predict the functional class of Open Reading Frames (ORFs) from the E. coli genome. RESULTS: The results from all three models show substantial improvement over previous methods, which were based on the C5 decision tree algorithm. The MNL model using a prior based on the hierarchy outperforms both the non-hierarchical MNL model and the nested MNL model. In contrast to previous attempts at combining the three sources of information in this dataset, our new approach to combining data sources produces a higher accuracy rate than applying our models to each data source alone. CONCLUSION: Together, these results show that gene function can be predicted with higher accuracy than previously achieved, using Bayesian models that incorporate suitable prior information.

Bayes Theorem↗

Water supply and sanitation in remote indigenous communities--priorities for health development.

OBJECTIVE: To review available national and State/Territory survey data on water supply and sanitation in remote Indigenous Australian communities and to discuss the findings in terms of priorities for health and infrastructure development. METHODS: Descriptive analysis of data on relevant variables from available data sources. RESULTS: All relevant published reports arose from only two data sources: the Community Housing and Infrastructure Needs Surveys, and from a Northern Territory-wide survey of community-owned dwellings. The data show that many communities do not have a reliable water supply and experience frequent and prolonged breakdown in sewerage systems. For example, 12% of communities of 50 people or more experienced five or more periods of water restrictions in a one-year period, and 10% of communities experienced sewage overflow or leakage 20 or more times in a one-year period. Items of basic household infrastructure regarded as essential for household hygiene are missing or not functional in many community-owned dwellings. For example, in about one-third of houses bathroom taps and toilet drainage required major repairs. CONCLUSION AND IMPLICATIONS: Given the widely accepted importance of water and sanitation to health, the data support the contention that poor environmental conditions are a major cause of poor health in remote communities and provide some measure at a national level of the magnitude of the problem. Action to ensure easy access to adequate quantities of water and secure sanitation should receive greater priority. There is need for better quality information systems to monitor progress, equity and accountability in the delivery of water and sanitation services.

Australia↗

Completeness and timeliness of tuberculosis case reporting. A multistate study.

BACKGROUND: Tuberculosis (TB) control activities are contingent on the timely identification and reporting of cases to public health authorities to ensure complete assessment and appropriate treatment of contacts and identification of secondary cases. We report the results of a multistate evaluation of completeness and timeliness of reporting of TB cases in the United States during 1993 and 1994. METHODS: To determine completeness of TB reporting, laboratory log books, death certificates, hospital discharge, Medicaid databases, and pharmacy databases were reviewed in seven states to identify possible unreported cases. Timeliness of TB reporting was calculated using the number of days between date of TB diagnosis and date of report to the local or state health department. Cases reported >7 days after diagnosis were considered to have delayed reporting. RESULTS: Of 2711 cases identified through review of secondary data sources, 14 (0.5%) were previously unreported to public health. The largest yield of unreported cases was identified through review of laboratory records; 13 of the 14 unreported cases were identified, of which eight were found only through this method. Timeliness of reporting varied between sites from a median of 7 days to a median of 38 days. The number of cases with delayed reporting varied from 5% to 53% between sites. Factors associated with delayed reporting included infectiousness, type of provider, diagnosing provider, and reporting source. CONCLUSIONS: Through a review of several different secondary data sources, few unreported TB cases were detected; however, timeliness of reporting was poor among the reported cases.

Adult↗

Usefulness of US cost-of-illness studies in healthcare decision making.

OBJECTIVE: Cost-of-illness studies have been completed on scores of diseases over the past 30 years. The goal of this study was to review published cost-of-illness studies on US populations in order to evaluate the potential usefulness of the results in decision making. METHODS: Medline and related databases were searched using diagnosis and economic terms. The bibliographies of the articles found were reviewed visually to identify further studies. Inclusion criteria required a specified diagnosis, the study to be published between 1 January 1985 and 30 April 1999 in an English-language peer-reviewed journal, a clearly defined US sample or national population, available and recent epidemiological data on prevalence and incidence of diagnosis, and money estimates of direct and/or indirect costs. Three readers reviewed each study. The senior reviewer settled all differences. RESULTS: Searches found 1725 published studies; only 110 (6.4%) met all inclusion criteria. Main reasons for rejection were insufficient cost data (80%), insufficient information on data sources and aggregation or estimation methods (56%), inadequate sector data e.g. hospitalisations or work loss (48%), study of value, not cost, of illness (44%), not a US population (30%) and insufficient population detail (19%). There were 80 diagnosis categories, 28 of which had more than one study. Only 5 diagnoses had > or = 5 studies--Alzheimer's dementia, depression, diabetes mellitus, mental illness and stroke. Multifold cost variations were found among studies within diagnosis categories, even with the same method and data sources. The more narrowly defined diagnoses, depression and stroke, had the smallest cost variation, 41.7 and 17.2%, respectively. A generalised linear regression model found that a significant portion of total and direct cost variance could be explained only for Alzheimer's dementia. CONCLUSIONS: The wide variation of cost estimates for the same diagnosis raises serious questions of comparability, accuracy, validity and usefulness of all studies. Implementing guidelines to standardise methods and study design for cost-of-illness studies would be a worthwhile first step. The advantages and disadvantages of using money or another metric such as disability-adjusted life-years as the prime outcome measure should also be publicly discussed.

Cost of Illness↗

[System of distributed storage and analysis of genomic information].

A distributed computing system is developed to search and analyze genetic databases using parallel computing technologies. Queries are processed by a local network PC cluster. A universal task and data exchange format is developed for effective query processing. A multilevel hierarchic task batching procedure is elaborated to generate multiple subtasks and distribute them over cluster units under dynamic priority levels and with dynamic distribution of replicated source data subbases. Primary source data preparation and generation of annotation word indices are used to significantly reduce query processing time.

Databases, Genetic↗

Using large-scale databases to measure outcomes in critical care.

The major intent of this article is to describe the availability and potential use of large-scale databases; however, it is first essential to know and understand the basic principles involved in the conduct and interpretation of observational outcomes studies. In this article, the authors briefly overview the design of observational outcomes studies as applied to critical care medicine. Then, criteria for evaluating data sources and for in-depth reviewing of the available data sources from which these observational studies can be conducted are discussed.

Critical Care↗

Exploiting the potential of routine data to better understand the disease burden posed by allergic disorders.

The Department of Health and Scottish Executive are currently undertaking independent reviews of allergy services in England (and Wales) and Scotland. Each review will assess the disease burden posed by allergic problems, involving secondary analyses of routine National Health Service (NHS) datasets. Major suggestions for re-structuring and/or re-focusing the NHS efforts to better deal with allergic disease are anticipated. The UK has some of the best datasets of routine health data in the world, but despite their strengths, they have important limitations. These include gaps in data collection, particularly in relation to monitoring of Accident & Emergency and out-patient consultations, and in-patient prescribing, thereby resulting in considerable under-estimates of hospital workload. The current gaps in service monitoring are likely to under-estimate the burden and workload associated with allergic problems, particularly in secondary care. One major limitation of existing data sources is the general inability to link individual patient level data between different datasets. By unlocking this potential there are very considerable potential gains to be made. Data linkage techniques currently being developed in the UK offer exciting new possibilities of looking across the primary-, secondary- and tertiary-care interfaces and also assessing short-and long-term social and educational outcomes in relation to allergic disorders. The current reviews of allergy services being undertaken need to be cognisant of these inherent limitations of existing data sources and would do well to recommend strategic initiatives that could enhance the availability, accessibility and quality of these datasets. Ideally, this should include investment in central data repositories staffed by teams with the necessary technical and statistical expertise, which would also take responsibility for progressing data linkage capabilities.

Drug Prescriptions↗

Etanercept in juvenile rheumatoid arthritis.

OBJECTIVE: To review the classification, pathophysiology, safety, and efficacy of treatment options for juvenile rheumatoid arthritis (JRA). Etanercept, the agent most recently approved by the Food and Drug Administration for use in JRA, is featured. DATA SOURCES: Articles were identified from a search of the MEDLINE database (1966 to January 2000) and through secondary sources. Meeting abstracts and posters were also evaluated. STUDY SELECTION AND DATA EXTRACTION: Articles identified and retrieved from data sources were evaluated and, if determined to be relevant, were included in this review. DATA SYNTHESIS: JRA represents a major cause of functional disability in children. In contrast to traditional therapeutic agents for JRA, which act through generalized antiinflammatory activity or generalized immunosuppression, new therapeutic modalities have been developed that target specific molecules involved in the pathophysiology of JRA. Etanercept inhibits the activity of tumor necrosis factor and lymphotoxin-alpha. In a clinical trial of patients with polyarticular-course JRA, etanercept-treated patients experienced less pain and swelling in their joints, decreased incidence of disease activity, less frequent flare, and a longer time to flare than patients receiving placebo. Treatment with etanercept was generally well-tolerated. CONCLUSIONS: Etanercept represents an exciting new therapeutic option for the treatment of JRA. The positioning of etanercept among other therapeutic options for JRA will be more clearly established as additional safety and efficacy data are made available.

Anti-Inflammatory Agents, Non-Steroidal↗

Glucose monitoring as a guide to diabetes management. Critical subject review.

PURPOSE: To encourage a balanced approach to blood glucose monitoring in diabetes by a critical review of the history, power and cost of glucose testing. DATA SOURCES: The Cambridge Data Base was searched and was supplemented by a random review of other relevant sources, including textbooks, company pamphlets, and laboratory manuals. STUDY SELECTION: Keywords used were "glucosuria diagnosis," "blood glucose self-monitoring," "glycosylated hemoglobin," and "fructosamine" for the 10-year period ending 1992, restricted to English language and human. DATA EXTRACTION: About 200 titles were retrieved and reviewed according to the author's judgment of relevance. FINDINGS: "Snapshot tests" (venous and capillary blood glucose) and "memory tests" (urine glucose, glycated hemoglobin fractions and fructosamine) must be employed according to individual patients treatment goals. Day-to-day metabolic guidance is facilitated by capillary blood glucose testing for patients receiving insulin and by urine glucose testing for others. Capillary blood glucose testing is mandatory in cases of hypoglycemia unawareness (inability to sense hypoglycemia because of neuropathy) but is not a substitute for a knowledge of clinical hypoglycemia self-care. Criteria by reason (clinical judgement and cost effectiveness) must be separated from criteria by emotion (preoccupation with technology and marketing). No randomized studies show that any of these tests consistently improve clinical outcome. Optimal metabolic control and cost savings can be expected from a rational selection of tests.

Blood Glucose↗

Is there value in using physician billing claims along with other administrative health care data to document the burden of adolescent injury? An exploratory investigation with comparison to self-reports in Ontario, Canada.

BACKGROUND: Administrative health care databases may be particularly useful for injury surveillance, given that they are population-based, readily available, and relatively complete. Surveillance based on administrative data, though, is often restricted to injuries that result in hospitalization. Adding physician billing data to administrative data-based surveillance efforts may improve comprehensiveness, but the feasibility of such an approach has rarely been examined. It is also not clear how injury surveillance information obtained using administrative health care databases compares with that obtained using self-report surveys. This study explored the value of using physician billing data along with hospitalization data for the surveillance of adolescent injuries in Ontario, Canada. We aimed i) to document the burden of adolescent injury using administrative health care data, focusing on the relative contribution of physician billing information; and ii) to explore data quality issues by directly comparing adolescent injuries identified in administrative and self-report data. METHODS: The sample included adolescents aged 12 to 19 years who participated in the 1996-1997 cross-sectional Ontario Health Survey, and whose survey responses were linked to administrative health care datasets (N = 2067). Descriptive analysis was used to document the burden of injuries as a proportion of all physician care by gender and location of care, and to examine the distribution of both administratively-defined and self-reported activity-limiting injuries according to demographic characteristics. Administratively-defined and self-reported injuries were also directly compared at the individual level. RESULTS: Approximately 10% of physician care for the sample was identified as injury-related. While 18.8% of adolescents had self-reported injury in the previous year, 25.0% had documented administratively-defined injury. The distribution of injuries according to demographic characteristics was similar across data sources, but congruence was low at the individual level. Possible reasons for discrepancies between the data sources included recall errors in the survey data and errors in the physician billing data algorithm. CONCLUSION: If further validated, physician billing data could be used along with hospital inpatient data to make an important and unique contribution to adolescent injury surveillance. The limitations inherent in different datasets highlight the need to continue rely on multiple information sources for complete injury surveillance information.

Activities of Daily Living↗