Techniques for the collection and reporting of data on community water supply. Report of a WHO Scientific Group.
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The National Cancer Data Base Report on treatment patterns for hepatocellular carcinomas: improved survival of surgically resected patients, 1985-1996.
BACKGROUND: The Commission on Cancer data from the National Cancer Data Base (NCDB) has previously reported data evaluating time trends in various cancers, including such elements as stage of disease at diagnosis, treatment, and survival for multiple tumor sites. In this report, data collected from 1985, 1986, 1990, 1991, 1995, and 1996 for primary hepatocellular carcinoma (HCC) tumors are presented. METHODS: The data presented in this review were collected from hospital cancer registries from across the U.S. Eight calls for data have yielded a total 6.9 million cases for the years 1985-1996, including 1158 HCC cases in 1985-1986, 3319 cases in 1990-1991, and 5683 cases in 1994-1995 from hospital cancer registries across the U. S. These data represent approximately 4.3%, 11.2%, and 14.8% of the estimated cases of carcinomas of the liver and biliary tract diagnosed in the U.S. in each of the three respective time periods. RESULTS: The outcome for patients diagnosed with HCC remains poor, with only 10% of patients with American Joint Committee on Cancer Stage I disease surviving 5 years. Approximately 50% of patients received no therapy for their HCC, even those with early stage disease. Over these three time periods, the use of chemotherapy appears to have decreased. Among patients diagnosed with Stage II and III disease a difference in survival was noted between those treated with surgery only and those treated with chemotherapy only. Women appear to have a limited survival advantage over men. CONCLUSIONS: In spite of an overall poor prognosis, subsets of patients with HCC appear to benefit from surgical resection/ablation of their tumor. The decreasing use of chemotherapy and the early reports of newer ablative techniques (e.g., cryotherapy) suggest that other treatment modalities are emerging. These NCDB data provide a baseline for HCC treatment from which prospective studies are being developed to assess the newer treatments as well as the underlying causes.
Adult↗
Unilateral limbic epileptic status activity: stereo EEG, behavioral, and cognitive data.
We report data from four patients with unilateral epileptiform status activity within different structures of the temporal lobe, recorded during stereoelectroencephalographic presurgical evaluation. The ictal clinical symptoms accompanying neocortical and mesiobasal limbic discharges (two patients with complex partial status epilepticus) consisted of various psychosensory and vegetative signs, which can be understood on the basis of the spatiotemporal analysis of the discharges. The other two patients with circumscribed long-lasting mesiobasal limbic epileptiform activity represent unilateral pure limbic status epilepticus and were characterized by a marked behavioral syndrome (with stickiness, aggressivity, etc.) and a monomorphic gustatory aura continua, respectively. The latter patient, with left hippocampal discharges of nearly continuous epileptiform character, was also assessed with tachistoscopic tasks. Performance revealed cognitive impairment only in the epileptically discharging hemisphere and in dependence on the quality of the EEG pattern. After unilateral selective amygdalohippocampectomy, the two patients with limbic status epilepticus were seizure free and had markedly improved behavior and cognitive functions. Thus, patients with nonconvulsive status epilepticus represent an ideal model, although rare, to correlate behavior alterations and brain dysfunction.
Adolescent↗
Data mining in spontaneous reports.
The increasing size of spontaneous report data sets and the increasing capability for screening such data due to increases in computational power has led to a recent increase in interest and use of data mining on such data. While data mining plays an important role in the analysis of spontaneous reports, there is general debate on how and when data mining should be best performed. While the cornerstone principles for data mining of spontaneous reports have been in place since the 1960s, several significant changes have occurred to make their use widespread. Superficially the Bayesian methods seem unnecessarily complex, particularly given the nature of the data, but in practice implementation in Bayesian framework gives clear benefits. There are difficulties evaluating the performance of the methods, but they work and save resources in managing large data sets. The use of neural networks allows more sophisticated pattern recognition to be performed.
Adverse Drug Reaction Reporting Systems↗
Study finds purchasers aren't using providers' outcomes data, quality report cards.
Are your data collection efforts for naught? A recent study shows that employers and purchasers overlook provider outcomes data and quality report cards when choosing health plans and providers--opting instead for customer satisfaction, HEDIS, and cost data. Here are the details on the study, plus advice from one of the study's authors.
Consumer Behavior↗
The National Cancer Data Base report on patterns of childhood cancers in the United States.
BACKGROUND: Patterns of and progress against childhood cancer have been reported on multi-institution, regional, national, and international bases by several sources in the past. These sources have included clinical cooperative group trials and population-based registries. In general, the population-based surveys have excluded brain tumors of either benign or uncertain behavior. The authors of this article investigated the patterns of data reported for the period 1985-1993, motivated by their interest in assessing the potential of National Cancer Data Base (NCDB) data to 1) facilitate individual institution review and 2) cover institutions that are not members of the Pediatric Oncology Group or the Children's Cancer Group, which are both national clinical cooperative groups. METHODS: Six annual calls for data, starting with a call for 1985 and 1988 cases, were issued to approximately 2100 hospitals with cancer programs (1340 programs approved by the Commission on Cancer of the American College of Surgeons and 760 other programs). The baseline data items of the NCDB included patient demography, tumor characteristics, initial treatment, and follow-up. The data for each patient were coded in the traditional manner by trained cancer registrars before being transmitted to the NCDB in standard format. RESULTS: In the most recent year for which data were reported, the NCDB included 42% of all estimated U.S. childhood cancers. The cases were reported by institutions that were members of the Pediatric Oncology Group and the Children's Cancer Group as well as nonmember institutions. The distribution of diagnostic groups reported to the NCDB was generally similar to that reported to SEER, except for lymphomas and brain cancer (the NCDB series included benign as well as malignant brain tumors). The distribution of diagnostic groups reported to the NCDB did not change over the 9-year reporting period (1985-1993). With regard to ethnicity, the most varied distribution of diagnostic groups was found among African American patients. For many types of cancer, the survival of those patients reported to the NCDB was similar to that of patients included in the SEER population-based series. These cancers included Wilms' tumor (NCDB 89% vs. SEER 88%), non-Hodgkin's lymphoma (NCDB 74% vs. SEER 70%), soft tissue sarcomas (NCDB rhabdomyosarcomas 70% and sarcomas 79% vs. SEER soft tissue sarcomas 71%), and neuroblastoma (NCDB 58% vs. SEER 57%). CONCLUSIONS: The authors concluded that the number of brain tumors of benign and uncertain behavior being diagnosed were significant enough in number that they should be included in regional and national cancer registries that report data for clinical purposes. They further concluded that for reasons of data inclusion and institutional coverage, the NCDB will be an important data base for pediatric cancers that will warrant increased use by pediatric investigators.
Adolescent↗
Academic physicians' opinions on preliminary reporting of echocardiographic data.
Preliminary reporting of echocardiographic data by cardiac sonographers has become a key issue in the echocardiography community. A survey on this issue was sent to 248 academic physicians and 89 (35.8%) were returned. In response to a question in the survey, 76 physicians stated that they had at least a limited amount of knowledge in echocardiography. For the group, 62% wanted a written or verbal preliminary report and 52% concluded that this report should be a part of the cardiac sonographer's position. If cardiac abnormalities are suspected, 65% wanted the results before the cardiologist reviewed the study, but only 42% of the physicians wanted a diagnostic versus a descriptive type of report. About 49% stated that if necessary they would attempt to influence the cardiac sonographer to give them a preliminary report, whereas 67% of the physicians would possibly use this information to medically manage the patient. Fifty percent believed that it was legal for a cardiac sonographer to give a preliminary report. Another 70% said that the cardiac sonographer would NOT be "practicing medicine without a license" and 66% concluded that they would NOT be "aiding and abetting the unauthorized practice of medicine" if given this information. These data have important potential ramifications for both cardiac sonographers as well as for the practice of cardiology regarding the issue of preliminary echocardiographic reports.
Adult↗
Validation of data in the Norwegian Arthroplasty Register and the Norwegian Patient Register: 5,134 primary total hip arthroplasties and revisions operated at a single hospital between 1987 and 2003.
BACKGROUND: The usefulness of a national medical register relies on the completeness and quality of the data reported. The data recorded must therefore be validated to prevent systematic errors, which can cause bias in reports and study conclusions. PATIENTS AND METHODS: We compared the number of hip replacements reported to the Norwegian Arthroplasty Register (NAR), 1987-2003, and to the Norwegian Patient Register (NPR), 1999-2002, with data recorded at a local hospital. The date of operation and the index hip were further validated to find inaccurately recorded data in the NAR. Kaplan-Meier estimated survival curves were compared to evaluate the possible influence of missing data. RESULTS: Of 5,134 operations performed at a local hospital, 19 (0.4%) had not been reported to the NAR. Completeness of registration was poorer for revisions (1.2%) than for primary operations (0.2%). Among 86 Girdlestone revisions (removal of the prosthesis only), 9 (11%) had not been reported to the NAR. Missing data on revisions, however, had only a minor influence on survival analyses. The date of the operation had been recorded incorrectly in 56 cases (1.1%), and the index hip in 12 cases (0.2%). The surgeon was responsible for 85% of these errors. Comparisons with data reported to the NPR, 1999-2002, showed that 3.4% of operations at the local hospital had not been reported to the NPR. INTERPRETATION: Only 0.4% of the data from a local hospital was missing in the NAR, as opposed to the NPR where 3.4% was missing. The information recorded in the NAR appears to have been valid and reliable throughout the entire period, and provides an excellent basis for clinically relevant information regarding total hip arthroplasty.
Arthroplasty, Replacement, Hip↗
Estimating the accuracy of screening mammography: a meta-analysis.
OBJECTIVE: To estimate the accuracy of mammographic screening. DESIGN: A meta-analysis of published literature. DATA SOURCES: Published English-language randomized controlled trials, case-control studies, and demonstration projects involving screening mammography were identified using recent review articles. We found additional references using MEDLINE searches combining the MeSH terms "mammography," "screening," and/or study authors and locations. STUDY SELECTION: We included all studies that provided information to calculate the true-positive rate (TPR) and the false-positive rate (FPR) for breast cancer screening. DATA EXTRACTION: Reported data were reviewed independently by the authors; calculations were compared and discrepancies resolved. We calculated the sensitivity as the number of breast cancers detected during the first round of screening (true positives) divided by the sum of the true positives and the false negatives (defined as cancer discovered within 1 year of screening). False-positives were determined by biopsy. DATA SYNTHESIS: TPR and FPR values from each study were plotted in receiver operating characteristic (ROC) space. Tests of homogeneity were performed to assess the validity of using summary ROC curves or a single point to summarize the data. The reported TPR and FPR of mammography ranged from 83% to 95% and 0.9% to 6.5%, respectively. The sensitivity of mammography is higher in women over the age of 50 years. CONCLUSIONS: The accuracy of mammography should be recognized and included in discussions about policies for screening for breast cancer. This meta-analysis, by quantifying the expected TPR/FPR, should assist program planners, physicians, and women to understand better the cost and clinical implications of such screening programs.
Adult↗
Surveillance for the Expanded Programme on Immunization.
Surveillance is the foundation of public health practice. This review examines the experience of surveillance in the Expanded Programme on Immunization (EPI). Surveillance systems include routine reporting, sentinel surveillance, and community-based reporting. Data from ongoing surveillance should be linked with those from supervision, health facility assessments, population surveys, and outbreak investigations to provide information for programme planning, implementation, evaluation, and modification. Evaluation of surveillance systems should assess the extent to which data are used for policy-making and programme improvement, and the simplicity, accuracy, completeness, timeliness and cost of the data. The surveillance of vaccine-preventable diseases has evolved as programmes mature, to monitor progress towards disease control targets. The establishment of goals to reduce measles cases by 90%, eliminate neonatal tetanus, and eradicate poliomyelitis has put increased emphasis on the need for effective disease surveillance. This opportunity should be taken to promote strengthening of national routine systems for disease surveillance, to make them effective instruments for prevention and control of diseases of public health importance.
Data Collection↗
The Utstein style for uniform reporting of data from out-of-hospital cardiac arrest.
The Utstein style for uniform reporting of data from out-of-hospital cardiac arrest was developed to solve a major problem in resuscitation research. Outcome measures related to cardiac arrest are difficult to evaluate or compare because there have been no uniform definitions or uniform agreements on what data to report. Widespread acceptance of the Utstein style will lead to a better understanding of out-of-hospital cardiac arrest.
Data Collection↗
The National Cancer Data Base report on patterns of care for testicular carcinoma, 1985-1996.
BACKGROUND: Previous Commission on Cancer data from the National Cancer Data Base (NCDB) have examined time trends in stage of disease, treatment patterns, and survival for selected cancers. In the current study data relating to patients diagnosed with testicular carcinoma in 1985, 1986, 1990, 1991, 1995, and 1996 are described. METHODS: The data reported in this review were collected from hospital cancer registries from across the U.S. Case information is submitted to the NCDB following guidelines established by the North American Association of Central Registries. Data items include patient demographics, tumor characteristics, initial course of therapy, and follow-up status. Eight calls for data have yielded a total of 6.9 million cases for the years 1985-1996, including 2280 testicular carcinoma cases in 1985-1986, 5677 cases in 1990-1991, and 7452 cases in 1995-1996. These data represent approximately 22.6%, 47.3%, and 51.4%, respectively, of the estimated cases of testicular carcinoma diagnosed in the U.S. in each of these 3 respective time periods. Cases diagnosed and reported to the NCDB between 1985-1991 and that had been staged according to the 4th edition of the American Joint Committee on Cancer (AJCC) manual for the staging of cancer (1567) were used in the analysis of survival outcomes. RESULTS: Four principle findings are reported. First, young men (age < 25 years) are diagnosed with advanced stage nonseminomatous germ cell tumors more frequently than are older men (age >/= 30 years). Second, although surgery and concomitant radiation are the standard therapy for early stage seminomas, surgery alone increasingly is being used. In the treatment of patients with advanced stage seminomas the use of surgery and radiation has declined slightly whereas surgery with concomitant chemotherapy appears to be employed with greater frequency. Third, surgery alone is the treatment of choice for patients with early stage nonseminomatous germ cell tumors and has been employed with increasing frequency over the three time periods studied. The use of surgery and concomitant chemotherapy has remained relatively stable over time in the treatment of patients with advanced stage nonseminomas. And fourth, survival rates decrease with increasing AJCC stage of disease. CONCLUSIONS: The NCDB data regarding testicular carcinoma highlight a number of important trends in the presentation and management of testicular tumors. These trends not only evaluate new protocols of treatment but also can be used to direct new strategies toward achieving earlier patient presentation.
Adult↗
Spina bifida and anencephaly prevalence--United States, 1991-2001.
Spina bifida and anencephaly are serious birth defects. To reduce the occurrence of these birth defects, the Food and Drug Administration authorized the fortification of all enriched cereal grain products with folic acid in March 1996, with compliance mandatory by January 1998. This report reviews data reported to CDC's National Center for Health Statistics (NCHS) regarding spina bifida and anencephaly prevalence for live births in the United States during 1991-2001. Since 1989, NCHS has compiled birth defect data from checkboxes that appear on birth certificates. For consistency in trends, this report uses data for 1991-2001 from all U.S. reporting areas except Maryland, New Mexico, and New York. Data for 2001 are preliminary. During 1996-2001, a 23% decline occurred in neural tube defects (spina bifida and anencephaly combined). Spina bifida declined 24% during this period, and anencephaly declined 21%. The United States has experienced declines in spina bifida and anencephaly cases since folic acid fortification of all enriched cereal grain products. The observed declines have translated into approximately 920 infants being born without these serious defects each year. Continued monitoring of the occurrence of spina bifida and anencephaly will be necessary to evaluate the effectiveness of folic acid fortification.
Anencephaly↗
Pediatric asthma care in US emergency departments. Current practice in the context of the National Institutes of Health guidelines.
OBJECTIVES: To determine whether US emergency department care for pediatric asthma conforms to the National Institutes of Health guidelines and whether the guidelines are likely to be adopted in clinical practice. DESIGN: Mail survey conducted from January to April 1992, and stratified by hospital type (children's, public and community). SETTINGS: Emergency departments of US hospitals. PARTICIPANTS: Simple stratified random sample of emergency department directors from 376 sampled hospitals. MEASUREMENTS: Self-reported data on emergency department pediatric asthma care, and knowledge and attitudes about the National Institutes of Health guidelines. Data are reported as mean (+/- SE). RESULTS: Sixty-eight percent of the surveyed emergency department directors responded. During 1991, there were an estimated 1.6 million visits for pediatric asthma care. Asthma accounted for 16.9% (+/- 9.0%) of all pediatric emergency department visits. Only 2.1% (+/- 1.0%) reported the use of written protocols or guidelines, with significant variation by hospital type. Sixty-seven percent (+/- 3.0%) reported the use of pulse oximetry. Eighty percent reported the use of beta-agonists by inhalation as the initial treatment. Only 44.7% (+/- 2.9%) reported the use of steroids if there was a poor response to the initial treatment. An estimated 45.5% (+/- 3.9%) of respondents had heard of the guidelines at the time of this survey; approximately 24% reported that they had read the guidelines. Most respondents reported that the guidelines were credible, clear and concise, and likely to be adopted in their emergency department. CONCLUSIONS: These data suggest that reported pediatric asthma care in US emergency departments differs substantially from the National Institutes of Health guidelines, with considerable variation by hospital type. The guidelines appear to provide an acceptable tool for emergency departments to use in assessing their pediatric asthma care. However, in light of the lack of evidence that the guidelines will improve outcomes, the impact of national guideline adoption remains unclear.
Asthma↗
Frequency of the deltaF508 mutation in 108 cystic fibrosis patients in Sao Paulo: comparison with reported Brazilian data.
PURPOSE: To analyze the frequency of the delta F508 (deltaF508) deletion mutation in 108 unrelated cystic fibrosis patients and compare the results with the previously reported data for Brazilian patients. Cystic fibrosis is the leading cause of genetic disease in Caucasians, and the deltaF508 deletion is the most common mutation associated with the disease. METHOD: The frequency of the deltaF508 mutation was assessed by means of a polymerase chain reaction (PCR) followed by detection in 8% silver-stained polyacrylamide gels. RESULTS: Twenty-three of 108 patients (21.3%) were homozygous for the deltaF508 deletion, 50 were heterozygous (46.3%), and the remaining 35 (32.4%) were non-carriers. In terms of alleles, there were 96 mutated (96/216 or 44.45%) and 120 wild-type ones (120/216 or 55.5%). CONCLUSION: The 44.45% of affected alleles that were found is higher than the 33% first described in 1993, but slightly lower than the 48% recently reported. Moreover, our data corroborated the idea that the frequency of the deltaF508 mutation is lower in Brazil in comparison to that found in studies carried out in Europe and North American (circa 70.0%), probably due to increased racial miscegenation. These findings must be taken into account before any genetic screening of the population is proposed in Brazil.
Brazil↗
Acute intoxication and recovery following massive turpentine ingestion: clinical and toxicological data.
Reports of acute turpentine intoxication, particularly containing toxicological data, are poorly verified in the literature. This report regards the intentional massive ingestion of turpentine solution in an elderly woman who developed mainly central nervous system manifestations, then had an impressive and quick total recovery although the initial prognosis was very bad. Blood and urine levels of turpentine were monitored using gas chromatography and at the early toxicogenic stage were 28 micrograms/mL and 15 micrograms/mL respectively. Gastric fluid analysis on admission to the hospital revealed the presence of approximately 200 mL turpentine in the intestine. A review of earlier reports is given.
Administration, Oral↗
Update: West Nile Virus activity--Eastern United States, 2000.
Data reported to CDC through the West Nile Virus (WNV) Surveillance System have shown an increase in the geographic range of WNV activity in 2000 compared with 1999, the first year that WNV was reported in the Western Hemisphere. In response to this occurrence of WNV, 17 states along the Atlantic and Gulf coasts, New York City, and the District of Columbia conducted WNV surveillance, which included monitoring mosquitoes, sentinel chicken flocks, wild birds, and potentially susceptible mammals (e.g., horses and humans). In 1999, WNV was detected in four states (Connecticut, Maryland, New Jersey, and New York) . In 2000, epizootic activity in birds and/or mosquitoes was reported from 12 states (Connecticut, Delaware, Maryland, Massachusetts, New Hampshire, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, Vermont, and Virginia) and the District of Columbia. Of the 13 jurisdictions, seven also reported severe neurologic WNV infections in humans, horses, and/or other mammal species. This report presents surveillance data reported to CDC from January 1 through November 15.
Adult↗
The radioactive drug research committee: Background and retrospective study of reported research data (1975-2004).
In the United States, human research involving radioactive drugs must be conducted under a Food and Drug Administration (FDA) investigational new drug (IND) application, unless specifically exempt from IND requirements, or under the direct oversight of a Radioactive Drug Research Committee (RDRC) as long as certain conditions are met. Research overseen by RDRCs is considered basic science research when its purpose is to advance scientific knowledge and not to determine a radioactive drug's safety and effectiveness as a therapeutic, diagnostic, or preventive medical product in humans. We retrospectively reviewed and analyzed available study data from annual reports submitted to the FDA dating back to 1976. In 1976, there were 18 studies involving 531 subjects compared with 2003, when there were 284 RDRC studies involving 2,797 subjects. In 1976, RDRC subjects were imaged 5% of the time using positron-emitting nuclides and 77% of the time with conventional gamma-emitting nuclides. In 2003, this was reversed with 77% using positron emitters and 5% using conventional gamma-emitters. In 1976, pediatric studies comprised 7.3% of all RDRC subjects; today pediatric RDRC studies are rarely conducted. Today the RDRC is used primarily by large medical research institutions. Although the program has a very good safety record, RDRC's 30-y-old regulations need to be revised to be consistent with current scientific knowledge and health policy.
Biomedical Research↗