Group pushes data reporting in Mich.
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Data Collection↗
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The need for uniform data reporting in mental retardation.
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Data Collection↗
Quality of data reported on abdominal aortic aneurysm repair--a comparison between a national vascular and a national administrative registry.
OBJECTIVE: To study consistency of data and completeness of reporting in a national vascular registry, NorKar, and a national administrative registry, The Norwegian patient register (NPR). DESIGN: Comparative registry-based national study supplemented with a comprehensive control of patients registered in one major hospital. MATERIAL: All patients registered with a procedure-code for treatment of AAA in NorKar or NPR during 2001 or 2002, were included. METHOD: We compared the reporting of procedure-codes, diagnosis-codes and in-hospital deaths after treatment for abdominal aortic aneurysm (AAA) in the two registries to evaluate completeness. Consistency between procedure-codes and diagnoses were evaluated within both registries. Completeness of reporting to one NorKar Local Registry was investigated in more detail in one of the hospitals. RESULTS: Compared with the NPR numbers, NorKar contained 69% of the patients treated for AAA in Norway, while completeness for NorKar member hospitals was 84%. The detailed investigation in one of the hospitals showed a completeness of 91% and a false inclusion of 5.3% of all cases treated for AAA. The consistency between procedure-codes and diagnosis-codes was 93% in both registries. We found evidence of substantial underreporting of in-hospital deaths to NorKar in several hospitals. Overall reporting of early deaths to NorKar relative to completeness of reported cases was estimated to 72%. CONCLUSION: There is an underreporting of patients with AAA to NorKar according to the NPR numbers and a need for better control of procedure-diagnosis consistency in both registries. There seems to be a substantial underreporting of early deaths to NorKar. Introduction of unique patient-identifiable data could improve the quality of both registries by making matching of data possible.
Angioplasty, Balloon↗
The need for self-report data in the assessment of stuttering therapy efficacy: repetitions and prolongations of speech. The stuttering syndrome.
BACKGROUND: Bloodstein reviewed hundreds of studies that investigated the efficacy of therapeutic protocols for ameliorating the stuttering syndrome. Surprisingly, almost all were effective in significantly reducing overtly perceptible behaviours such as repetitions and prolongations of speech sounds. These results seem highly improbable considering that many of the treatment methods were diametrically opposed in their principles and implementation procedures (e.g. psychoanalysis, drug therapy, behaviourism, cognitive behavioural therapy and auditory feedback devices with rate control, etc.). In addition, time and more ecologically valid methods such as self-report measures demonstrate that overt measures of success are tenuous, their ameliorative effects tend to diminish drastically over time and show poor generalizability. Further, the real conundrum in stuttering therapy is the failure to acknowledge stuttering as a complete syndrome of continuous compensatory behaviours. AIMS: To highlight how self-report measures serve as a primary tool to understand the syndrome-like nature of stuttering and to test the efficacy of the therapy outside the confines of the clinic and the needs of the people who stutter. METHODS & PROCEDURES/OUTCOMES & RESULTS: In the past, therapeutic efficacy has typically been measured by the reduction in overtly observable and countable events of stuttering such as repetitions and prolongations. However, recent neuroimaging data and our research suggest that the stuttering syndrome is more than the mere presence of peripheral speech disruptions. Stuttering is a central, experiential sense of 'loss of control' that manifests itself across a continuum of compensatory behaviours from the central nervous system outwards to the speech periphery. In other words, aberrant neural activity, as well as covert stuttering behaviours, subperceptual stuttering forms and overt speech disruptions are all effects or compensations for the central involuntary 'neural block'. Hence, by counting only perceptible portions of the disorder, efficacy measures 'fail to capture' the experiential sense of 'loss of control' and the covert compensatory behaviours of the disorder (i.e. avoidances of words or situations, substitutions, circumlocutions, subperceptual stuttering forms, etc.). Furthermore, unnatural sounding speech, decreased ease of speech production, elevated levels of clinic room fluency and poor reliability in counting stuttering behaviours confound the overt measures in the clinic milieu. Therefore, while overt measures remain important, used in isolation, they cannot provide a 'true metric' of efficacy. CONCLUSIONS: Any efficient and effective means of evaluating intervention methods over the long-term should include a form of self-report as a primary tool as it best accesses the experiential sense of 'loss of control' and other covert behaviours. Overt measures should be used to supplement or complement the self-report data.
Brain↗
Bicycle accidents and injuries: a pilot study comparing hospital- and police-reported data.
Bicycle accident and injury data collected by two different samples of North Carolina hospital emergency rooms during the summers of 1985 and 1986 are examined and compared with state police-reported bicycle accident data for the same time periods. Of the 649 emergency room treated bicyclists, 62% were children aged 5-14 and 70% were male. Nineteen percent of the riders suffered moderate or worse injuries (AIS greater than or equal to 2), and 6% were hospitalized. In contrast, less than half of the police-reported accidents involved riders under 15 years of age, 85% of the riders were male, and two-thirds suffered moderate or worse injury. Whereas virtually all of the police-reported accidents involved a motor vehicle, less than a fifth of the emergency room cases did. Only 10% of the emergency room cases were duplicated on the state accident files. It is estimated that 800 children ages 0-19 are hospitalized annually in North Carolina for bicycle-related injuries, and an additional 13,300 children receive emergency room treatment.
Accidents↗
Hypertension awareness and pain reports: data from the NHANES III.
BACKGROUND: For this study we investigated the relationship between hypertension, pain reports, and hypertension awareness in a large and diverse sample of men and women. METHOD: Data collected during the Third National Health and Nutrition Examination Survey (NHANES III) were examined for reports of pain at four body sites (chest, back, legs, and gallbladder) in 9,427 adults. Respondents were classified into four groups based on their self-reports of a previous diagnosis of hypertension (yes, no) and their current blood pressure levels (hypertensive, normotensive). RESULTS: Logistic regression analyses indicated that hypertensives who were unaware of their condition were significantly less likely to report chest pain than normotensives without a previous hypertension diagnosis; however, these groups did not differ in pain reports at other body sites. In contrast, both hypertensives and normotensives with a previous hypertension diagnosis were significantly more likely to report pain at several body sites as compared to normotensives without a previous hypertension diagnosis. It was also found that when hypertension awareness was held constant, resting systolic blood pressure was negatively associated with the likelihood of reporting chest and gallbladder pain. CONCLUSIONS: These findings suggest that existing laboratory evidence of hypertension-related hypoalgesia may not translate to decreased daily pain symptoms, although there is intriguing evidence of dampened cardiac pain in hypertensives who are unaware of their condition.
Adult↗
Lifeline Registry of Endovascular Aneurysm Repair: Registry data report.
PURPOSE: The goal of the Lifeline Endovascular Registry is to provide a minimal, yet comprehensive, data set of patient follow-up that can evaluate the long-term safety of endovascular grafts used in abdominal aortic aneurysm repair. METHODS: Follow-up data have been collected on 1757 patients for this first report, including 1646 endovascular graft recipients and 111 surgical patients receiving treatment for abdominal aortic aneurysm. RESULTS: Logistic regression of 1-year survival indicates that the factors most likely to decrease 1-year survival for the surgical group are renal failure and larger aneurysm size. For the endovascular graft recipients, the presence of renal failure, chronic obstructive pulmonary disease, congestive heart failure, larger aneurysm size, and increased age demonstrates a decrease in 1-year survival. Approximately 80% (1309) of the endovascular recipients have been followed for 1 year. Of these 1309 patients, 17% (222) have incurred an endoleak, and enlargement of the aneurysm has occurred in 4.6% (60). There was a total of 80 (4.9%) endovascular graft recipients converted to surgery. The most prevalent factors causing conversion to surgery were an increase in aneurysm diameter, aneurysm rupture, and the presence of a proximal endoleak. CONCLUSIONS: Although the data collected by the Registry thus far are limited, we anticipate rapid expansion of the Registry to include data from other manufacturers and investigators. Nevertheless, early data analysis does demonstrate the importance of surveillance of endovascular graft recipients. Through the collection and analysis of Registry data, adverse events continue to be captured, enabling the monitoring of long-term safety of endovascular grafts and the evaluation of graft performance. Data on comorbidities and postoperative factors, collected and evaluated for their effect on survival of the graft recipients, also provide information on optimal patient selection and management. We expect that the next report will support and expand on these findings, providing continuing evidence of the value of a national endovascular registry.
Aged↗
Diagnostic subgroups of craniomandibular disorders. Part I: Self-report data and clinical findings.
An overview is given of the most commonly investigated signs and symptoms associated with craniomandibular disorders as detected in a population of patients with craniomandibular disorders and in four defined diagnostic subgroups. The information was collected with a questionnaire and during an extensive clinical examination. Comparison of self-report and clinical data indicated that these two methods reveal different aspects of the patient's complaints and should be interpreted in their own way. The results showed that no statistically significant differences could be found between the four diagnostic subgroups with respect to occlusal factors, trauma, and clinically assessed parafunctional habits. The groups differed considerably with respect to general characteristics, pain variables, signs of craniomandibular disorders, self-reported para-functional habits, psychosocial factors, and general health factors. However, despite the reduction in clinical characteristics of the four subgroups, there was little reduction in the diversity of factors associated with craniomandibular disorders. This implicates that almost all factors associated with craniomandibular disorders may influence the initiation and perpetuation of the different disorders in the individual patient, and therefore, remain of interest in future research.
Adolescent↗
Measuring sick leave: a comparison of self-reported data on sick leave and data from company records.
The objective of this study was to compare sick leave data obtained from questionnaires with data from company records. During a period of 12 months, questionnaires were completed monthly for 6 months and then at 9 and 12 months. The sensitivity and specificity of questionnaires for detecting an episode of sick leave were determined, using the company records as a reference standard. In addition, the duration of sick leave episodes reported in the two data sets was compared. In this analysis, company records were not assumed to be superior, and agreement was assessed with intraclass correlation coefficients (ICCs). The sensitivity of questionnaires for detecting an episode of sick leave was 55% (95% CI = 0.50-0.60) and the specificity 83% (95% CI = 0.72-0.94). The ICC for all episodes was 0.58 (95% CI = 0.47-0.67). The only satisfactory ICC (0.87; 95% CI = 0.74-0.93) was found for the questionnaires at 9 and 12 months. No large systematic differences were found between the duration of episodes reported in the two data sets. In conclusion, in our study, the sensitivity of questionnaires for detecting an episode of sick leave was very low. Furthermore, when episodes were recalled, there was little agreement on the duration of the episode between questionnaire data and data in the company records. Based on these results and considering the risk of missing questionnaires, data on sick leave gathered from company records are clearly preferable as an outcome measure in research.
Absenteeism↗
A review of sex differences in sexual jealousy, including self-report data, psychophysiological responses, interpersonal violence, and morbid jealousy.
The specific innate modular theory of jealousy hypothesizes that natural selection shaped sexual jealousy as a mechanism to prevent cuckoldry, and emotional jealousy as a mechanism to prevent resource loss. Therefore, men should be primarily jealous over a mate's sexual infidelity and women over a mate's emotional infidelity. Five lines of evidence have been offered as support: self-report responses, psychophysiological data, domestic violence (including spousal abuse and homicide), and morbid jealousy cases. This article reviews each line of evidence and finds only one hypothetical measure consistent with the hypothesis. This, however, is contradicted by a variety of other measures (including reported reactions to real infidelity). A meta-analysis of jealousy-inspired homicides, taking into account base rates for murder, found no evidence that jealousy disproportionately motivates men to kill. The findings are discussed from a social-cognitive theoretical perspective.
Affective Symptoms↗
Organization of event reporting data for sense making and system improvement.
Feedback and demonstrable local usefulness are critical determinants for adopting event reporting by an organization. The classification schemes used by an organization determine whether an event is recognized or ignored. Near miss events, by their frequency and information content concerning recovery, merit recognition. "Just" cultures are learning cultures that provide a safe haven in which errors may be reported without the fear of disciplinary action in events without reckless behavior. As event report databases grow, selection and prioritization for in depth investigation become critical issues. Risk assessment tools and similarity matching approaches such as in case based reasoning are useful in this regard. Root cause analysis provides a framework for the collection, analysis, and trending of event data. The importance of both internal and external risk communication as valuable reporting system components may be overlooked.
Communication↗
Data-reporting considerations.
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Costs and Cost Analysis↗
Excerpts from United States Renal Data System. 1994 annual data report.
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Cause of Death↗
Negative affect relates to cross-sectional but not longitudinal symptom reporting: data from elderly adults.
To test hypotheses about the relationship between negative affect and symptom reports, symptom reports of 4 groups of elderly participants (N = 76; mean age = 73.5 years) were compared: those high on measures of both depression and anxiety, those high on one measure and low on the other, and those low on both measures. Symptom reports were obtained before and after 3 simultaneously given active inoculations (influenza; tetanus toxoid; and keyhole limpet hemocyanin, a neoantigen) and 3 similarly given placebo injections. Cross-sectional analyses replicated associations between negative affect and reports of elevated systemic (flulike) symptoms. Local symptoms (sore arm and redness at injection site) increased significantly from before to after active inoculations. Reports of systemic symptoms declined from before to after for both active and placebo inoculations regardless of affect groups. The results add to previous research showing that negative affect is related to cross-sectional symptom reporting but not to increases in symptom reporting from before to after a symptom-producing inoculation procedure.
Aged↗
[Validity of patient self report data in rehabilitation research: identifying circumstances of the patients' completion of questionnaires].
BACKGROUND: Self-report questionnaires have become wide-spread and are an integral part in different fields of rehabilitation. However, it is still unclear to what extent the validity of the patients' reports is affected by motivational factors. How difficult is it for the patient to fill out questionnaires? What are the situational characteristics in which the patients fill them out? The present study aims to identify the situational, motivational and cognitive requisites of the respondents and to analyse possible impacts on the validity of self-reports. METHOD: A total of n = 105 patients scheduled for inpatient rehabilitation were interviewed by means of a guided open-ended interview in the admission phase. It is a consecutive sample of all admissions in two rehabilitation clinics in Schleswig-Holstein, which provide each patient with a questionnaire to fill out prior to their stay. The analysis involved a description of statements (categories) that have been derived by content analysis based on the patient interviews. In addition, physicians rated various patients' characteristics at the end of their hospital stay. RESULTS: The participation rate of the patients was 95.5 %. Of all patients, 95 % filled out the questionnaires at home, 69 % without a break. 57 % of the patients interviewed had filled out the questionnaires by themselves without any help, another 22 % worked it through together with their partner or spouse. The extent of influence on the responses appeared to be dependent on the amount of help necessary. In a substantial number of patients the questionnaires were regarded as an "official" document that had to be worked through meticulously. Physicians attested 96 % of the patients to have provided honest reports with regard to personal characteristics, and 95 % to have shown a sufficient degree of willingness of self-disclosure. By and large the patients' perceptions of themselves fit with the perceptions the physician in 76 % of the patients from the physicians' point of view. All patients except one were attested a positive motivation to take part in rehabilitation activities in the clinic by the physician. In individual cases there were substantial deficits of cognitive capacities necessary to work through a questionnaire, as well as limitations in literacy. Four patients had insufficient mastery of the German language. DISCUSSION AND CONCLUSION: The vast majority of the patients possessed sufficient motivational and cognitive prerequisites to provide valid self-reports. Patients with problems in responding asked partners or others for help, its impact on the self-reports being as yet not clear-cut. In individual cases it can not be ruled out that patients who think about early retirement provide distorted statements.
Adult↗
A look at life on the job for mortality data reporters.
Mortality statistics are used for research and public heahlh management throughout the world. The data from which such statistics are derived can he traced back to the coding personnel rcporting mortality data. In this article, we take a look at the training and educational background of these professionals--and whether it is equivalent to their responsibilities.
Data Collection↗
A large simple clinical trial prototype for assessment of OTC drug effects using patient-reported data.
PURPOSE: Innovative methods are needed to assess risks related to treatment for common medical conditions, where therapy is usually patient-directed or over-the-counter (OTC), and where tolerability, i.e. patient experienced events, may affect patterns of use. A large-scale, blinded, randomised trial was conducted to compare the tolerability of paracetamol (acetaminophen), aspirin and ibuprofen at OTC doses, with patient-reported adverse event (AE) data as the primary outcome. METHODS: Patients with mild to moderate pain were randomised to either: paracetamol up to 3 g/d, aspirin up to 3 g/d or ibuprofen up to 1200 mg/d for 7 days. Patients recorded AE and severity in a diary as the primary data source. After inclusion, contact with patients by general practitioner (GP) investigators was by telephone after 24 hours and 7-9 days, and unscheduled visits, when GPs recorded AE. The study outcome was the frequency of significant adverse event (SGAE) (serious, severe, moderate or undefined intensity, or resulting in withdrawal or an investigator visit). RESULTS: Of 8677 patients included, 44 patients were non-evaluable, leaving 8633 evaluable patients; 1347 patients reported SGAE (paracetamol: 14.5%, aspirin: 18.7%, ibuprofen: 13.7%). Completed diaries were returned by 98.5% of patients, and only 49 cases were lost to follow-up (0.6%). Almost all patients were contacted by telephone, 99.3% at the first call, and 98.5% at the second. Most SGAE were reported by patients; only 27 patients (2%) had a SGAE reported only by the GP. The tolerability rankings by treatment were consistent for all categories of SGAE: aspirin had the highest incidence of SGAE, and ibuprofen and paracetamol, lower, comparable incidences. CONCLUSIONS: A large, simple, randomised trial with patient-generated data can provide a sensitive source of information on AE, particularly in comparative safety assessments of OTC medications and other short-term therapies. This suggests reconsideration of the view that investigators are the most valid source for identifying and reporting AE.
Acetaminophen↗
The validity of behavioral data reported by injection drug users on a clinical risk assessment.
The validity of drug and sexual behavior data collected by drug user treatment staff using a short clinical risk assessment among 387 injection drug users is evaluated using in-depth, confidential interview process. Moderate to high agreement levels were found for most, but not all, variables. Participants consistently reported less risky behaviors on the clinical risk assessment than on the in-depth interview. More easily recalled information can be accurately gathered through a short clinical risk assessment. However, in-depth, confidential interviewing is important when gathering self-reports of the frequency of drug and sexual behaviors.
Adolescent↗