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The Swiss Hidden Population Study: practical and methodological aspects of data collection by privileged access interviewers.

In order to recruit heroin and/or cocaine users outside treatment settings, recruitment of subjects through Privileged Access Interviewers (PAI) was tested and implemented in the Swiss Hidden Population Study. This article discusses practical aspects of the PAI method as well as issues of reliability and validity. From June 1994 to June 1995, 31 Privileged Access Interviewers were recruited in the main regions of Switzerland. They conducted 943 standardized interviews altogether, of which 917 could be considered valid. Fifty-four per cent of the respondents correspond to the criteria of the target population. The PAI method collects reliable data in a relatively short amount of time, given adequate means of control. Analysis of the age distribution and of the patterns of drug use in our sample shows that the question of validity is mainly linked to the diversity of the milieus from which PAIs recruit the respondents. Encouraging PAIs to do as many interviews as possible did not skew the data. Hence, well-founded inferences on a PAI generated database relies on the analysis of qualitative information on the ways in which the Privileged Access Interviewers have recruited their respondents.

Adolescent↗

Opportunities and obstacles in electronic data collection in nursing.

The article deals with the advantages and drawbacks of electronic data collection in nursing. The first part underlines the importance of data standards and common terminology, and traces the evolution of nursing informatics over the past decades. The main national and international projects in this field are listed. The second part describes the role of the government in promoting electronic collection of data on nursing care. In the third part, the information technology required for electronic collection of data is presented, and the current situation in Slovenia in this field is outlined. In the final part, the author suggests steps to be taken in order to achieve the final goal: an electronic nursing record in Slovenia.

Data Collection↗

Does the mode of data collection change results in a subjective knee score? Self-administration versus interview.

Our objective was to compare the effect of two methods of data collection on results in a functional knee score. Two Lysholm scores were obtained for 61 patients 1 year after anterior cruciate ligament surgery at the same clinic visit. First, the patients completed a self-administered questionnaire, and second, the Lysholm score form was completed by the investigator in the course of a patient interview. A comparison of the scores revealed that the mean score was significantly lower with self-administration (self, 89.3 +/- 10.6; interviewer, 92.2 +/- 7.4) (P = 0.0035, Wilcoxon rank sum test). The assignment to one of four categories (excellent, good, fair, poor) was also significantly altered by the manner of data collection. Nineteen patients (31%) were assigned to different categories based on the mode of data collection. We believe that the major reason for a better score result with an interview was the presence of interview bias. The more the investigator is involved in the treatment of the patient, the greater the influence of this bias may be. To avoid such potential bias we suggest that a standardized self-administered questionnaire be used as the method of choice for obtaining subjective data in clinical settings.

Adult↗

Comparison of diagnostic decision rules and structured data collection in assessment of acute ankle injury.

BACKGROUND: Ankle decision rules help to determine which patients with ankle injuries should undergo radiography. However, these rules are limited by imperfect generalizability and sensitivity. The judgement of physicians, aided by structured data collection, is a potential alternative. We compared the diagnostic performance of 2 decision rules with the performance of physicians, aided by structured data collection, in ruling out fracture in patients with acute ankle injury. METHODS: Consecutive patients with acute ankle injury who visited the emergency department of a teaching community hospital in Amsterdam were included in the study. After taking the patient's history and performing a physical examination, the surgical resident in each case completed a specially developed structured data form incorporating all of the variables in the Ottawa and Leiden ankle rules, as well as some additional variables. The form then asked whether the resident thought radiography was necessary. Each patient then underwent ankle and midfoot radiography. The films were independently interpreted by a radiologist and a trauma surgeon, who were both blinded to the information on the data form. Sensitivity, specificity and the percentage of patients for whom radiography was recommended were the main outcome measures. RESULTS: Of 690 consecutive patients, 647 met the inclusion criteria. Fractures were observed in 74 (11%) of these patients. Sensitivity was 89% (95% confidence interval [CI] 80% to 95%) for the Ottawa ankle rules, 80% (95% CI 69% to 88%) for the Leiden ankle rule and 82% (95% CI 72% to 90%) for physicians' judgement. Specificity was 26% (95% CI 23% to 30%), 59% (95% CI 55% to 63%) and 68% (95% CI 64% to 71%) respectively. Radiography was recommended in 76% (95% CI 72% to 79%), 46% (95% CI 42% to 50%) and 38% (95% CI 34% to 42%) of cases respectively. The Ottawa rules missed 8 fractures, of which 1 was clinically significant, the Leiden rule missed 15 fractures, of which 5 were clinically significant, and the residents missed 13 fractures, of which 1 was clinically significant. INTERPRETATION: Physicians' judgement, aided by structured data collection, was similar to existing international and local decision rules in terms of sensitivity in identifying cases requiring radiography and may outperform these prediction rules in terms of minimizing radiographic examinations for patients with ankle trauma.

Acute Disease↗

The accuracy of eclampsia cases reported to the Victorian Inpatient Minimum Database and the Perinatal Data Collection Unit.

The aim of this study was to compare the quality of the reporting and coding of eclampsia in two routine data collections: the Victorian Inpatient Minimum Database (VIMD) and the Perinatal Data Collection Unit (PDCU). The validity of cases in the two data sets was confirmed by reference to the original medical record data. Only 12 cases were the same in both data sets (i.e., 35.3% agreement). There were an additional 51 cases that were reported to either one or the other of the data sets and, of these, only 15 (i.e., 29%) were confirmed as eclampsia. The overall number of cases confirmed for both systems in 1995 was 27, or 0.4 per 1000 confinements. Reasons for these discrepancies were investigated and three basic problems identified: quality of documentation in the medical record, coding errors, and use of data from computer-generated forms. Neither the VIMD nor the PDCU was regarded as having sufficiently accurate data for adequate reporting of maternal morbidity. By combining the information from both databases a better estimate of incidence can be obtained, but improved reporting and coding is essential for accurate assessment of this condition.

Adult↗

A finite mixture distribution model for data collected from twins.

Most analyses of data collected from a classical twin study of monozygotic (MZ) and dizygotic (DZ) twins assume that zygosity has been diagnosed without error. However, large scale surveys frequently resort to questionnaire-based methods of diagnosis which classify twins as MZ or DZ with less than perfect accuracy. This article describes a mixture distribution approach to the analysis of twin data when zygosity is not perfectly diagnosed. Estimates of diagnostic accuracy are used to weight the likelihood of the data according to the probability that any given pair is either MZ or DZ. The performance of this method is compared to fully accurate diagnosis, and to the analysis of samples that include some misclassified pairs. Conventional analysis of samples containing misclassified pairs yields biased estimates of variance components, such that additive genetic variance (A) is underestimated while common environment (C) and specific environment (E) components are overestimated. The bias is non-trivial; for 10% misclassification, true values of Additive genetic: Common environment: Specific Environment variance components of.6:.2:.2 are estimated as.48:.29:.23, respectively. The mixture distribution yields unbiased estimates, while showing relatively little loss of statistical precision for misclassification rates of 15% or less. The method is shown to perform quite well even when no information on zygosity is available, and may be applied when pair-specific estimates of zygosity probabilities are available.

Humans↗

Audio-computerized self-interviewing versus face-to-face interviewing for research data collection at drug abuse treatment programs.

AIMS: To assess audio computer-assisted self-interviewing (A-CASI) as a mode of data collection with injecting drug users (IDUs) entering two drug treatment programs in New York City. A-CASI has been found to increase reporting of sensitive items among a variety of population subgroups. DESIGN: A field test of A-CASI data collection conducted within an ongoing cross-sectional study of drug use and HIV risk behaviors among IDUs entering drug treatment. Participants were assigned without bias to either a computer-assisted interviewer-administered personal interview (CAPI) or to a mixed CAPI/A-CASI interview. In the latter, 'sensitive' portions (dealing with stigmatized behavior) of the questionnaire were self-administered through A-CASI, while the remaining portions were interviewer-administered. SETTING: The Detoxification Program and the Methadone Maintenance Treatment Program (MMTP) at Beth Israel Medical Center in New York City. PARTICIPANTS: Seven hundred and eighty-three IDUs entering drug treatment. MEASUREMENTS: Odds ratios and adjusted odds ratios (controlling for demographic differences) for comparison of A-CASI versus CAPI responses on 111 sensitive questions. FINDINGS: Twenty-three statistically significant differences (each at P < 0.05), all in the direction of more reporting of the behaviors by the A-CASI group. Forty-one per cent of A-CASI participants said they would prefer any subsequent interviews to be fully A-CASI and 46% said they would prefer the mixed CAPI/A-CASI mode. CONCLUSIONS: A-CASI was associated with greater reporting of potentially stigmatized drug, sex and HIV risk behaviors on a moderate number of questions. Moreover, a large majority of participants who used A-CASI would like to be assigned to this method of data collection in future interviews.

Adult↗

Patient satisfaction in the ambulatory setting. Influence of data collection methods and sociodemographic factors.

To evaluate the impact of patient characteristics and method of data collection on satisfaction results used for the comparison of practice locations, questionnaires were distributed to 1,208 adult outpatients at five medicine clinics, either on-site or by mail. Patient dissatisfaction with three service domains was measured: communication with the provider, courtesy of the office staff, and timeliness of care. Practice location, survey methodology, and patient characteristics were significant predictors of dissatisfaction, and adjustment for the latter two factors affected the rankings of practices by dissatisfaction rates for all three domains. Further study of the impact of patient characteristics and method of data collection should be conducted before the comparison of unadjusted satisfaction results becomes the accepted standard.

Adult↗

Enhancing survey data collection among youth and adults: use of handheld and laptop computers.

Tobacco use, alcohol and other drug use, early sexual behavior, dietary practices, physical inactivity, and activities that contribute to unintentional and intentional injuries are a significant threat to the health of young people. These behaviors have immediate and long-term consequences and contribute to diminished health, educational, and social outcomes. Research suggests that health risk behaviors exhibited during adolescence and adulthood have their origins earlier in childhood and preventive interventions are less successful after the risk behaviors have begun. Therefore, efforts to prevent health risk behaviors are best initiated in late childhood or early adolescence. However, to document the efficacy of these efforts, reliable, valid, and parent/child-friendly systems of data collection are required. Computerized data collection for research has been found to improve privacy, confidentiality, and portability over the paper-and-pencil method, which, in turn, enhances the reliability of sensitive data such as alcohol use or sexual activity. We developed programming tools for the personal computer and a handheld personal data assistant to offer a comprehensive set of user interface design elements, relational databases, and ample programming languages so that adults could answer 261 items and youth 346 items. The purpose of the article was to describe an innovative handheld computer-assisted survey interview method of collecting sensitive data with children aged 9 to 11. The method was developed as part of a large multisite, national study to prevent substance use.

Adolescent↗

X-ray data collection from macromolecular crystals.

Instruments, methods, and software for modern macromolecular crystallography is becoming so effective that molecular biologists often can solve structures from their crystals by working "without a license." In this chapter, the authors attempt to demystify some of the apparatus and techniques by providing a roadmap. Current methods for collecting X-ray diffraction data from macromolecular crystals are described. The principles of operation of the required X-ray sources, optics, goniometers, and detectors are outlined, and a typical data collection protocol is presented. Optimization of data quality is a pivotal stage in the whole crystallographic process, so much attention is given to the detailed setting up of the experiment. This is followed by a summary of the basic ideas behind the diffraction image-processing packages and their application to data reduction. Despite the increasingly "black box" nature of these computer programs, understanding how they extract the intensities, errors, and indices from the data can make subsequent structure solution and refinement much easier.

Crystallization↗

Comparison of information obtained by operative note abstraction with that recorded on a standardized data collection form.

BACKGROUND: The Ischemic Optic Neuropathy Decompression Trial compared optic nerve decompression surgery with careful follow-up for treatment of patients with nonarteritic ischemic optic neuropathy. Surgeons submitted a standardized data collection form and operative notes for 123 patients randomized to and undergoing surgery. The purpose of this study was to see whether operative notes have sufficient and reliable data to avoid development of a surgery data collection form in future trials. METHODS: We abstracted data from Ischemic Optic Neuropathy Decompression Trial patient operative notes, calculated the proportion of completed responses, and compared abstracted responses with those originally recorded on corresponding case report forms. RESULTS: Variables used to identify persons, dates, or eye (left/right) were reported 100% of the time on operative notes and with excellent agreement with those recorded on the case report form (median agreement, 100%; range, 95% to 100%). Categoric variables, used to establish the characteristics of surgical steps, were also reported reliably on operative notes (median agreement, 84%; range, 0 to 100%). Open-ended variables tended to be reported more frequently on operative notes (exact agreement, 57% and 34%, respectively, for complications and postoperative medications). Quantitative variables were infrequently reported but correlated well with values reported on the data collection forms (Pearson correlation coefficients, 0.78, 0.79, 0.94, 0.96). For many variables, disagreements were minor and often were related to interpretation of the operative notes by the abstractor. CONCLUSION: In our trial, operative note abstraction adequately documented surgery date and surgeon and provided more complete information than the standardized report form with respect to complications but did not provide complete information for other variables.

Abstracting and Indexing↗

The impact of skin diseases on patients: comparing dermatologists' opinions with research data collected on their patients.

BACKGROUND: Research data suggest that the detection of psychiatric disorders by dermatologists is not completely satisfactory, and that patients and dermatologists often assess patients' quality of life differently. Given that expectations influence perception and cognitia, these discrepancies might at least in part descend from conceptual models of skin disease that are prevalent among dermatologists. OBJECTIVES: We explored to what degree dermatologists' opinions about quality of life and prevalence of psychiatric disorders in several dermatological conditions corresponded to the actual data collected on their patients. METHODS: All dermatologists working in a large institution were asked to express on a five-point scale their opinion about the quality of life and the prevalence of depressive and anxiety disorders in different skin conditions. Physicians' opinions were then compared with the results of a large research project on quality of life and psychological well-being in dermatological out-patients performed in their institution some months before. RESULTS: Forty-six dermatologists (82%) agreed to participate and completed the research questionnaire. We observed a fairly good concordance between dermatologists' opinion about the impact of the various skin conditions on patients' lives and survey data on quality of life impairment. With regard to psychiatric morbidity, we found that dermatologists believe that psychiatric disorders are substantially less frequent than they actually are in many skin conditions. CONCLUSIONS: The belief that psychiatric morbidity is rare in patients with certain skin conditions might hamper, at least in part, the recognition of psychiatric disorders in these patients. Dermatologists probably should be more alert to the question of psychiatric morbidity in their patients. Allocating more space to this issue in training programmes for dermatologists might favour a shift in their conceptual models of skin disease.

Adult↗

Data collection and utilization: bringing physicians on board.

Healthcare financial managers can encourage the physicians in their organizations to help collect and utilize clinical and performance data in four ways. The data should be used to develop individual physicians' practice preferences by emphasizing patient outcomes. Modified treatment recommendations or protocols that rely on the performance data should be introduced as improvements to be adopted just as the physicians would alter practice behavior based on data published in medical journals. Physician advice and direction should be solicited about how to collect data and how best to use those data within the organization. Finally, physicians should be included in any financial benefits that result from successful data utilization.

Benchmarking↗

Improving dental epidemiologic data collection with computers.

A computerized dental data recording system (DDRS) was developed for the New England Elder Dental Study to improve data quality and increase field staff efficiency. The DDRS displays video screens similar to traditional paper forms to record data on coronal and root caries, dentate and denture status, subacute bacterial endocarditis screening, gingival bleeding, calculus, and periodontal attachment level. DDRS provides facilities for date and exam-component time tracking, on-line contextual comments, random record retrieval, editing, data backup, and data output in various data formats. This study compared the DDRS with a paper-form system for data entry accuracy. Dental caries and periodontal disease measurement data from 38 subjects were recorded on paper forms and independently entered using DDRS. The DDRS identified 150 illogical data errors, 39 inconsistent data errors, 7 invalid data and 34 miscellaneous data errors. Four technicians with field experience using both paper forms and DDRS reported time savings using DDRS in the field. DDRS has the potential for additional time savings by minimizing the time for data coding, cleaning, and management. Results demonstrate that DDRS could improve the quality of oral epidemiologic data by mandating strict adherence to protocols, preventing errors, and increasing field efficiency.

Computers↗

Pilot study of the introduction of the J95 health data collection system.

J95 is a health data collection system aimed at gathering information on the weight of health problems facing the Army in order to allow rational and effective prioritization. Before implementing the system Army-wide, a pilot study has been undertaken to validate the J95 ICD 9-based classification system, to test the practical problems encountered with operating the system and its practical value to decision-makers. Both internal and external coding validity were tested in terms of agreement with a "gold standard' and in terms of repeatability and they scored highly. A number of problems were identified analysing discordances and using the comments raised by the participants. A final shortened version of the classification was developed accordingly. The report also contains a number of examples of the potential of the system which is due to be implemented by 1 January 1996.

Humans↗

The success of data collection in the palliative setting--telephone or clinic follow-up?

Assessment of outcomes is essential in order to improve available palliative treatments. Collecting follow-up information can be a challenging task in the palliative setting. We compared the effectiveness of data collection by telephone contact and clinic visit in 112 patients with brain metastases treated with whole-brain radiotherapy. The first 56 patients (group A) were followed by telephone only. The second 56 patients (group B) were asked to attend an outpatient clinic appointment 4 weeks after radiotherapy. Successful contact was defined as obtaining data at week 4. Patients in the two groups did not differ significantly with regard to age, sex, performance status, primary site, number of brain metastases, or the treatment given. The proportions of patients with successful follow-up contact at week 4 were 45% and 61% in groups A and B, respectively ( P = 0.09). The quality of the collected data did not differ significantly between the two groups. The side effects and responses to therapy were similar. However, there were significantly more patients with a reduced dose of dexamethasone among the successful contacts in group B, which probably reflected the better condition of the patients coming back to clinic at week 4. In conclusion, there was a trend towards more successful data collection in our clinic follow-up. Some of the observed outcome data suggest that the two methods of follow-up might be reaching different populations of patients; considering this and the high attrition rate, a combined follow-up strategy of clinic and telephone contacts might be the best strategy.

Ambulatory Care↗

Tutorial: planning for data collection. Part III--Sample size.

There is no simple answer to the question, "how large a sample should I take?" Sample size depends on various data collection design details and on how we intend to use the data in future decision making. But with careful thought and some basic statistical knowledge, even nonstatisticians can determine the appropriate sample size for achieving useful results from data collection efforts.

Data Collection↗