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Use of the short form health survey (SF-36) in patients with amyotrophic lateral sclerosis: tests of data quality, score reliability, response rate and scaling assumptions.

OBJECTIVES: To evaluate response rate, data quality, score reliability and scaling assumptions of the 36 item Short Form Health Survey (SF-36) in a large scale pan European survey of amyotrophic lateral sclerosis (ALS) patients. DESIGN: A questionnaire based survey of patients diagnosed with ALS across 15 European countries. SAMPLE PATIENTS: presenting at neurological clinics for treatment of their condition were asked to partake in the survey. RESULTS: 948 patients have been recruited into the survey, from whom responses have been gained in 754 (79.5%). Scores on the eight dimensions of the SF-36 were found to manifest high internal consistency reliability. Items were, in most instances, found to be most highly correlated with their own (corrected) scale score than with other scale scores. However, on two dimensions (role-physical and role-emotional) there was high levels of missing data, together with substantial floor and ceiling effects. The two factor model (of underlying constructs of physical and emotional health) for the SF-36 suggested by the developers was not supported in this patient group. CONCLUSION The SF-36 appears to provide reliable information for this patient group, and for the most part there are high levels of item completeness and good spread of scores. This is not, however, true for the role functioning dimensions. Furthermore, the underlying two factor model for the SF-36 was not supported. The implications for measuring health status in this patient group are discussed.

Aged↗

Consequences of impaired data quality on information retrieval in electronic patient records.

OBJECTIVES: To assess the quality of specific information in electronic patient records and the consequences of sub-optimal data quality on automated information retrieval. METHODS: Patient records were evaluated with respect to accuracy of data relevant for retrieval according to a source-oriented, time-oriented and concept-oriented view of the record. Retrieval effectiveness was estimated using various methods based on record structure, text based retrieval and combinations of these. RESULTS: 98.1% of record documents were consistent regarding author, 99.8% regarding department of origin and 90.9% regarding document date. Document type was definitely not consistent in 8% of the documents. Estimated recall was 97% with 50% precision for document retrieval on the basis of date, and varying from 31 to 100% for retrieval based on document type. Retrieval based on manually supplied semantic tags performed better than simple string-based methods and improved when combined with string-matching mechanisms. CONCLUSIONS: Data attributes central for automated document retrieval in electronic patient records showed variable accuracy, with potentially negative consequences for basic record navigation. Text-based retrieval was inferior to methods based on data representing record structure. Quality of specific information elements suffered from lack of precise definitions and adequate mechanisms for quality assurance.

Information Storage and Retrieval↗

The emerging role of the health information management professional in data quality and analysis of an electronic medical record system.

The role of the health information management professional is changing with the advancement of the electronic medical record system (EMRS) and electronic financial database systems. The Medical ARchival System, a longitudinal EMRS developed at the University of Pittsburgh Medical Center, was used to describe the methodology that the health information management professional should use when performing data quality evaluations and data analysis of an EMRS. Specific examples of steps used to integrate databases to collect the data and generate appropriate reports and tables are also described and discussed.

Academic Medical Centers↗

Microarray data quality analysis: lessons from the AFGC project. Arabidopsis Functional Genomics Consortium.

Genome-wide expression profiling with DNA microarrays has and will provide a great deal of data to the plant scientific community. However, reliability concerns have required the development data quality tests for common systematic biases. Fortunately, most large-scale systematic biases are detectable and some are correctable by normalization. Technical replication experiments and statistical surveys indicate that these biases vary widely in severity and appearance. As a result, no single normalization or correction method currently available is able to address all the issues. However, careful sequence selection, array design, experimental design and experimental annotation can substantially improve the quality and biological of microarray data. In this review, we discuss these issues with reference to examples from the Arabidopsis Functional Genomics Consortium (AFGC) microarray project.

Arabidopsis↗

Data quality after restructuring a national medical registry.

The validity of the 1991 Finnish Medical Birth Registry data was assessed, with special emphasis on the effects of changes made to the data collection form in 1990. Data abstracted from medical records for all births occurring in 49 hospitals during a five-day sample period (n = 865) were compared to the register information. Good or satisfactory validity was found for 32 of 33 variables, when minor error was tolerated in variables with continuous scales. For diagnoses and procedures, recorded in check-box format, satisfactory validity was found for 10 of 45 variables. Validity could not be assessed for 18 variables because of insufficient number of cases (13 items) or definition problems (5 items). When the results were compared to a 1987 data quality study, many of the variables that had been changed to the check-box format showed improvement in validity. In addition, in some cases a small change in question alternatives or instructions caused a noticeable change in validity.

Abstracting and Indexing↗

A call for mtDNA data quality control in forensic science.

There is increasing evidence that many of the mitochondrial DNA (mtDNA) databases published in the fields of forensic science and molecular anthropology are flawed. An a posteriori phylogenetic analysis of the sequences could help to eliminate most of the errors and thus greatly improve data quality. However, previously published caveats and recommendations along these lines were not yet picked up by all researchers. Here we call for stringent quality control of mtDNA data by haplogroup-directed database comparisons. We take some problematic databases of East Asian mtDNAs, published in the Journal of Forensic Sciences and Forensic Science International, as examples to demonstrate the process of pinpointing obvious errors. Our results show that data sets are not only notoriously plagued by base shifts and artificial recombination but also by lab-specific phantom mutations, especially in the second hypervariable region (HVR-II).

DNA Fingerprinting↗

The amyotrophic lateral sclerosis assessment questionnaire (ALSAQ-40): tests of data quality, score reliability and response rate in a survey of patients.

OBJECTIVES: To evaluate response rate, data quality, and score reliability of the 40 item Amyotrophic Lateral Sclerosis Assessment Questionnaire in a survey of MND patients. DESIGN: A survey of members of the MND Association of the UK, of which half were randomly allocated to receive a survey instrument from the MND Association and the other half allocated to receive the MND Association survey instrument and also the ALSAQ-40 questionnaire. SAMPLE: Five hundred patients were randomly selected from the membership lists of the MND Association, of whom 250 received the MND Association Survey and the ALSAQ-40. RESULTS: Response rate to the survey was 59.2%. Over half of the respondents received the ALSAQ-40. Data for individual items were analysed and found to be distributed across all response categories. All items were found to be highly associated with the scales to which they contribute. Internal consistency reliability of all the five scales of the ALSAQ-40 was also found to be high. CONCLUSION: Inclusion of the ALSAQ-40 into the survey did not have an adverse effect upon response rates. Furthermore, the ALSAQ-40 was shown to have highly desirable psychometric properties. This paper provides further evidence of the reliability and validity of the measure.

Adult↗

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy.

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8-12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias.

Bias↗

Data quality of PAH determinations in environmental monitoring.

The sources of uncertainty affecting measurements of pollutants include sample collection, handling and stocking, and analytical procedure. With regard to chemical analysis, MS detection offers a series of advantages for resolving complex mixtures and identify and quantify analytes present at very small extents. Nevertheless, it presents some problems of reproducibility, which can affect the quality of quantitative data. PAH represent key-compounds among atmospheric pollutants and are usually evaluated by means of dedicated methods comprising MS detection. Based upon the above considerations, an analytical method has been standardized, suitable for determining PAH in atmospheric aerosols and diesel particulate exhausts. To test the procedure, both diesel particulate and urban aerosol NIST reference materials (SRM-2975 and SRM-1649A, respectively) have been processed and the results have been compared with certified and/or literature data. The results obtained are shortly discussed.

Aerosols↗

The immunization data quality audit: verifying the quality and consistency of immunization monitoring systems.

OBJECTIVE: To evaluate the consistency and quality of immunization monitoring systems in 27 countries during 2002-03 using standardized data quality audits (DQAs) that had been launched within the framework of the Global Alliance for Vaccines and Immunization. METHODS: The consistency of reporting systems was estimated by determining the proportion of third doses of diphtheria-tetanuspertussis (DTP-3) vaccine reported as being administered that could be verified by written documentation at health facilities and districts. The quality of monitoring systems was measured using quality indices for different components of the monitoring systems. These indices were applied to each level of the health service (health unit, district and national). FINDINGS: The proportion of verified DTP-3 doses was lower than 85% in 16 countries. Difficulties in verifying the doses administered often arose at the peripheral level of the health service, usually as the result of discrepancies in information between health units and their corresponding districts or because completed recording forms were not available from health units. All countries had weaknesses in their monitoring systems; these included the inconsistent use of monitoring charts; inadequate monitoring of vaccine stocks, injection supplies and adverse events; unsafe computer practices; and poor monitoring of completeness and timeliness of reporting. CONCLUSION: Inconsistencies in immunization data occur in many countries, hampering their ability to manage their immunization programmes. Countries should use these findings to strengthen monitoring systems so that data can reliably guide programme activities. The DQA is an innovative tool that provides a way to independently assess the quality of immunization monitoring systems at all levels of a health service and serves as a point of entry to make improvements. It provides a useful example for other global health initiatives.

Child↗

Neuronal morphology data bases: morphological noise and assesment of data quality.

For technical, instrumental and operator-related reasons, three-dimensional reconstructions of neurons obtained from intracellularly stained neuronal pieces scattered in serial sections are blurred by some morphological noise. This noise may strongly invalidate conclusions drawn from models built using the three-dimensional reconstructions and it must be taken into account when retrieving digitized neurons from available databases. We analyse the main generating sources of the noise and its consequences for the 'quality' of the data. We provide tools for detecting and evaluating the noise in any database providing sufficient information is given in the database. We propose a unified format for submitting data and a new neuron viewer/editor to analyse the digitized neurons with our tools.

Animals↗

[The national patient registry. Evaluation of data quality].

The Danish National Patient Register, which includes information on all patients admitted to hospitals, has been evaluated as concerns the quality of the data included. The material examined consisted of a representative sample of 1094 patients from departments all over the country (gynaecology and obstetrics, medicine, surgery and paediatrics). Recoding of data, clinical as well as administrative, based on copies of the case records from the hospitals was carried out by two clinically working physicians (registrars). For the administrative data e.g. length of stay, satisfactory concordance was found. The validity of clinical information depended on clinical speciality and degree of diagnostic specificity. Based on the international classification the agreement on the three digit diagnostic level was better than on the five digit diagnostic level. For surgery the agreement was better than for medicine. The agreement between the diagnostic information (primary diagnosis) and the recoder in choosing primary diagnosis varied from 66-83 percent on the five digit level and between 73-89 percent on the three digit diagnostic level. If cases where the diagnosis in the registry could be regarded as an acceptable alternative were included, the agreement between the registry and recoding was 75-90%. In a subsample of the material double coding by the two coders was carried out and it was remarkable that, taken as a whole, the degree of agreement between the two coders was of the same size as between recoder and the registry. It is anticipated, however, that introduction of ICD-10 with more clear-cut rules for choice of primary diagnosis in morbidity coding will contribute to better validity and consequently improved hospital statistics.

Denmark↗

Ensuring data quality in a multicenter clinical trial: remote site data entry, central coordination and feedback.

In an ongoing multicenter clinical trial, "Treatment Strategies in Schizophrenia," the five participating sites have the capacity to perform a variety of tasks or study functions independently. These tasks include (a) verification of diagnostic eligibility through the use of computerized decision algorithms; (b) assignment of patients to treatment based on prognostic indicators using a computerized randomization algorithm; (c) entry of data into a microcomputer using a clinical trial data management system that performs simple range and missing data item checks; and (d) regular transfer of all data to the central coordinating team. The clinical trial data management system employed allows for both independent site functioning and assurance of consistency across sites. The integration of a variety of software outside the main data management system provides the central coordinators with the tools to monitor critical data as it is collected, as well as the capacity to assess the flow, quality, and uniformity of the ongoing trial.

Clinical Trials as Topic↗

National surveillance for the human ehrlichioses in the United States, 1997-2001, and proposed methods for evaluation of data quality.

This report describes the data accumulated during the first 5 years of national surveillance for the human ehrlichioses in the United States and territories, from its initiation in 1997 through 2001. Reported cases of human monocytic and granulocytic ehrlichiosis (HME and HGE) and cases of "other ehrlichiosis" (OE), where the agent was unspecified, originated from 30 states. As anticipated, most HME cases were from the south-central and southeastern United States, while HGE was most commonly reported from the northeastern and upper-Midwestern region. State-level incident reports of 487 HME, 1,091 HGE, and 11 OE cases were evaluated. The average annual incidences of HME, HGE, and OE per million persons residing in states reporting disease were 0.7, 1.6, and 0.2, respectively. The median ages of HME (53 yr) and HGE cases (51 yr) were consistent with published patient series. Most (> 57%) ehrlichiosis patients were male. The results suggest that national surveillance for the ehrlichioses, although imperfect in coverage, will help define endemic regions and may be useful for monitoring long-term trends. Although the data appear representative of the demographic profiles established for HME and HGE, rigorous evaluation of the system is required. Methods are proposed for evaluating the quality and representativeness of HME and HGE surveillance data, using well-established surveillance systems for Rocky Mountain spotted fever and Lyme disease.

Ehrlichiosis↗

Data quality in evaluation of an alcohol-related harm prevention program.

The authors report the reliability and convergent validity in a sample of college students for 27 composite scales and two items covering alcohol use, cigarette smoking, marijuana use, and other drug use; beliefs relating to alcohol use; perceived norms for alcohol-related behavior; harm prevention skills; intentions to take prevention action; harm prevention action taken; risk taken; experienced harm; and other health-related behaviors and person characteristics. Data quality assessment strategies and missing data procedures were illustrated for large, multivariate, longitudinal data sets. Results indicate 23 of the 27 composite scales had at least acceptable reliability, and the remaining 4 composite scales had at least marginally acceptable reliability. At least moderate construct validity was demonstrated for 25 scales.

Adult↗

Clinical data quality: impact on revenue.

In large measure, individual hospitals' survival and growth in a prospective payment environment depend on management's abilities to develop both an aggressive strategic plan and short-term monitoring systems to ensure the quality of the clinical data. In general, managers should capitalize on factors favorable to the hospital, minimize the impact of unfavorable factors, and position the organization to respond favorably to expect future changes. To accomplish these three goals, the quality of the clinical data must be analyzed and linked to revenue expectations. Then, if needed, the next step is to implement short-term actions to improve any data deficiencies that are identified. In this way, the hospital's clinical data, which are an accurate reflection of services rendered, can be used with confidence for long-term strategic and financial planning.

Data Collection↗

Analyses of data quality in registries concerning diabetes mellitus--a comparison between a population based hospital discharge and an insulin prescription registry.

To evaluate the data quality in the Danish National Registry of Patients (DNRP) and the Prescription Registry in the country of Northern Jutland (487,000 inhabitants) concerning insulin dependent diabetes mellitus (IDDM) and insulin treated diabetes mellitus, a comparison between data in the two registries was made. From the Regional Hospital Registry in the County of Northern Jutland, containing discharge diagnoses from all admissions to hospitals in the county, we identified all patients with the IDDM diagnosis between 1987 and 1993. From the Regional Prescription Registry all insulin prescriptions taken up at pharmacies in the county in 1993 were identified. All persons were identified by their individual identification number (CPR-number), and a record linkage between the two data sources was made. The predictive value of an IDDM-registration in the DNRP was 96% and the corresponding completeness 91%. In the Prescription Registry the completeness was 96%. Both registries seem to be valuable study bases for epidemiological research in diabetes mellitus.

Denmark↗