Biomedical subjects

Kenneth D Mandl

Publications and source records attributed to Kenneth D Mandl.

18 recordsLinked to original sources

PubMed2025

Genetic Landscape of Opsoclonus-Myoclonus-Ataxia Syndrome in Children.

BACKGROUND: Opsoclonus-myoclonus-ataxia syndrome (OMAS) is a rare neurological disorder, with involuntary rapid saccadic conjugate eye movements as one of characteristics, primarily affecting the cerebellum. While the exact pathogenesis remains unclear, genetic and autoimmune factors have been suggested to contribute to its development. METHODS: We enrolled patients diagnosed with OMAS before the age of 18 years at a pediatric neuroimmunology clinic in Boston, United States, using the 2004 Genoa Criteria. Whole genome sequencing was conducted for the patients and their biological parents in all cases, with one case including an unaffected twin sibling. RESULTS: De novo germline variants (DNVs) in probands were identified and validated and analyses of structural variants, recessive variants in neuroimmune-associated genes, and high-resolution human leukocyte antigen (HLA) typing were performed. Our study included 42 patients, 23 of whom had neuroblastoma. We found 12 confirmed DNVs in protein-coding regions in nine patients (29.0% of 31 from 30 trios and 1 quartet). Ten patients (23.8% of 42) had rare homozygous or compound heterozygous variants known to alter protein function, affecting 11 genes. Notably, the major histocompatibility complex, class II, DR beta 1 (HLA-DRB1) ∗01 allele was observed in 27 out of 84 (32.1%) alleles in the patients, significantly higher than that in the general population (chi-square test, P < 0.0001). In one case, a potential genetic modifier of OMAS with severe cerebellar atrophy was identified, associated with a protein-truncating DNV in the CACNA2D2 gene. CONCLUSIONS: This first genome sequencing study reveals potential genetic contributors to OMAS, implicating polygenic predisposition-with HLA-DRB1∗01 as a possible factor-combined with nongenetic risk factors like neuroblastoma.

Humans↗

PubMed2004

Is it influenza or anthrax? A decision analytic approach to the treatment of patients with influenza-like illnesses.

STUDY OBJECTIVE: We analyze the risks and benefits of alternative treatment strategies for non-septic-appearing febrile patients with influenza-like illnesses and possible exposure to anthrax. METHODS: We used a decision analytic model to evaluate 6 testing and treatment strategies in an emergency department. Patients were non-septic-appearing and had influenza-like illnesses but low likelihood of exposure to anthrax. The following interventions were used: (1) no empiric antibiotics; (2) blood culture and treatment only if the result was positive; (3) rapid testing for influenza and, for those who tested negative, treatment with 60 days of ciprofloxacin; (4) a two-test strategy in which all patients were first tested for influenza; those who tested negative had a blood culture test and were treated empirically with ciprofloxacin for 3 days while waiting for blood culture results; (5) culture test for all patients and treatment with ciprofloxacin for up to 3 days while waiting for blood culture results; and (6) treatment of all patients with ciprofloxacin empirically for 60 days. Main outcome measures were deaths, complications from anthrax, adverse events from ciprofloxacin, and ciprofloxacin patient-days. RESULTS: For nonzero probabilities of anthrax, patient mortality was always lowest in the strategies in which all patients were treated empirically for anthrax either for 60 days or for 3 days pending blood culture results. These strategies, however, were associated with more morbidity (more ciprofloxacin patient-days and more antibiotic adverse events) than were strategies without empiric treatment. The numbers of adverse events and antibiotic patient-days were reduced substantially with the two-test strategy, in which patients with influenza were identified early and not treated. In general, for probabilities of anthrax equaling or exceeding 2%, treating all patients empirically for 60 days was best, but for probabilities between 0.1% and 2%, the sensitivity of blood culture for anthrax determined the optimal strategy: when the sensitivity exceeded 95%, a short course of empiric ciprofloxacin until blood culture results became available was best, but for sensitivities below 95%, more aggressive empiric antibiotics use was warranted. The proportion of patients with influenza in the community affected the choice of strategy, so that seasonal variation exists. CONCLUSION: During influenza season, our findings support rapid testing for influenza, followed by empiric treatment for anthrax pending blood culture results for those who test negative for influenza. Our results help to highlight the importance of developing rapid and sensitive tests for anthrax and of developing improved surveillance and methods to calculate the previous probability of attacks.

Anthrax↗

PubMed2004

Selective imaging strategies for the diagnosis of appendicitis in children.

BACKGROUND: We previously reported an appendiceal imaging protocol in which children with equivocal clinical presentations for acute appendicitis undergo ultrasonography (US) followed by computed tomography (CT). However, risk groups of children who would benefit most from imaging studies have not been established. OBJECTIVE: To define and test selective imaging guidelines to increase diagnostic accuracy and reduce unnecessary testing for children with suspected appendicitis. METHODS: We modeled outcomes under 3 different management guidelines. Patients were risk-stratified by a recursive partitioning analysis of a retrospective cohort. Subjects included children with equivocal presentations of acute appendicitis evaluated between January 1996 and December 1999. By using recursive partitioning, 3 risk groups were identified: low, medium, and high risk for acute appendicitis. Three imaging guidelines were defined. Under the first guideline, representing standard clinical practice at Children's Hospital Boston at the time of the study, all children with equivocal signs and symptoms for acute appendicitis undergo US first. If the US is positive, the child proceeds to appendectomy. If the US is negative, the child undergoes CT. Under guideline 2, low-risk children undergo US and, if negative, are discharged from the hospital. High-risk children undergo CT, and medium-risk children undergo US followed by CT. Under the third guideline, low-risk children undergo no imaging and are admitted for observation. High-risk children proceed directly to appendectomy without imaging studies. Medium-risk children undergo US followed by CT. Clinical outcomes and the number of imaging studies performed were modeled under current practice and under each guideline. RESULTS: Identified were 1401 cases of equivocal appendicitis; 958 (68.4%) with complete data. The mean age was 11 +/- 4.3 years. Of 958 children, 588 (61.4%) had acute appendicitis. One hundred forty-three patients were in the low-risk group, defined as neutrophils 67%, white blood cell count >10,000/mm(3), guarding, and abdominal pain >13 hours. Of these, 202 (90%) had appendicitis. Under guideline 1, there were 22 negative appendectomies, 35 missed or delayed diagnoses, and 958 USs and 673 CT scans performed. Under guideline 2, there would have been 23 negative appendectomies, 36 missed or delayed diagnoses, and 733 USs and 637 CT scans performed. Under guideline 3, there would have been 36 negative appendectomies, 37 missed or delayed diagnoses, and 590 USs and 412 CT scans performed. CONCLUSIONS: Selective imaging guidelines can reduce the number of radiographic studies performed with minimal diminution in accuracy of diagnosis of pediatric appendicitis.

Appendicitis↗

PubMed2004

Length-of-stay policies and ascertainment of postdischarge problems in newborns.

OBJECTIVE: The purpose of this study was to evaluate the effects of an early postpartum discharge program and a subsequent legislative mandate for 48 hours of hospital coverage on incidence of newborn jaundice and feeding problems. We tested the hypothesis that heightened postdischarge ascertainment (rather than short stays) is responsible for apparent increases in these outcomes. METHODS: Interrupted time series analysis was conducted on retrospective data from the automated medical records of a large Massachusetts health maintenance organization (HMO). A population of 20,366 mother-infant pairs with normal vaginal deliveries between October 1990 and March 1998 was identified. The interventions included a new HMO protocol in 1994 of 1 hospital overnight after delivery, plus a nurse home visit, then the Massachusetts' 1996 minimum coverage law. Postpartum length of stay, clinical evaluation on day 3 or 4 of life, health center visits up to day 21, health center diagnoses of jaundice or feeding problems, bilirubin testing and test severity, rehospitalizations, and emergency department visits were measured. RESULTS: Postpartum stays <2 nights rose from 28% of newborns before implementation of the program to 70% immediately after implementation. Later, this rate fell from 66% before the mandate to 21% just after the law went into effect. Day 3 or 4 evaluation rose from 24.5% to 64% after the program, then dropped somewhat to 53% after the mandate. Controlling for longer-term trends in health center visits, implementation of the early discharge program was associated with approximately 1 extra visit for every 4 newborns within the first 21 days of life. The state mandate did not affect health center visit rates. Jaundice diagnoses were flat at 8% of newborns during the baseline, then rose to a constant 11% throughout the program and postmandate periods. Bilirubin testing of newborns also rose by 3.4 percentage points at the time of program implementation, and the proportion of tested newborns with results calling for at least consideration of phototherapy rose by 6 percentage points. Phototherapy use rose from a flat 1.8% to 2.4% of newborns after program implementation. Feeding problem diagnoses more than doubled at the time of program implementation and remained elevated after the mandate. Rehospitalizations overall and specifically for jaundice were constant over time, whereas more rare emergency department visits for jaundice dropped from 0.3% of newborns to 0 on program implementation. CONCLUSIONS: Sudden increases in jaundice-related measures and identification of infant feeding problems were not associated with changes in length of stay in this setting. Instead, these increases seem to be the result of more frequent evaluation of newborns during the critical day 3 to 4 period and may also have been elevated by a new climate of concern about neonatal vulnerability. "Ascertainment bias" may have confounded findings in previous reports that raised concerns about the safety of early discharge.

Breast Feeding↗

PubMed2004

Efficacy of an educational Web site for educating physicians about bioterrorism.

OBJECTIVES: To determine whether a Web-based educational intervention improves emergency physicians' knowledge about bioterrorism and to survey physicians' knowledge and sources of information on bioterrorism. METHODS: Prospective randomized controlled trial using pre- and postintervention testing in hospitals. Participants were general and pediatric emergency medicine attending physicians, fellows, and fourth-year emergency medicine residents. All participants completed a pretest and attended a lecture on bioterrorism. Participants were then randomized to the Web intervention group that received continuous access to a bioterrorism educational Web site with weekly exposure to case scenarios of diseases due to biological agents, or the control group. Participants were retested after one and six months and surveyed to identify their sources of information and assess their knowledge. RESULTS: Sixty-three physicians completed the pretest. There was no difference in mean +/- standard deviation (SD) pretest scores between Web intervention (45% +/- 10%) and control (44% +/- 10%) groups (mean difference: 1.9%; 95% confidence interval [CI] = -6.7% to 2.9%). There was no significant difference between pre- and posttest scores among groups at one month (Web intervention 48% +/- 10% vs. control 45% +/- 10%; mean difference: 3.3%; 95% CI = -8.5% to 2.0%) and six months (Web intervention 51% +/- 8% vs. control 47% +/- 9%; mean difference: 3.8%; 95% CI = -8.8% to 1.2%). More than 60% of physicians cited media reports as their primary source of information on bioterrorism and believed that their knowledge of bioterrorism was limited after one month. CONCLUSIONS: Providing physicians information on bioterrorism through simulated cases and continuous access to an educational Web site does not increase knowledge of bioterrorism. Physicians are more likely to use media reports for their primary source of information.

Attitude of Health Personnel↗

PubMed2003

Implementing syndromic surveillance: a practical guide informed by the early experience.

Syndromic surveillance refers to methods relying on detection of individual and population health indicators that are discernible before confirmed diagnoses are made. In particular, prior to the laboratory confirmation of an infectious disease, ill persons may exhibit behavioral patterns, symptoms, signs, or laboratory findings that can be tracked through a variety of data sources. Syndromic surveillance systems are being developed locally, regionally, and nationally. The efforts have been largely directed at facilitating the early detection of a covert bioterrorist attack, but the technology may also be useful for general public health, clinical medicine, quality improvement, patient safety, and research. This report, authored by developers and methodologists involved in the design and deployment of the first wave of syndromic surveillance systems, is intended to serve as a guide for informaticians, public health managers, and practitioners who are currently planning deployment of such systems in their regions.

Bioterrorism↗

PubMed2003

Using temporal context to improve biosurveillance.

Current efforts to detect covert bioterrorist attacks from increases in hospital visit rates are plagued by the unpredictable nature of these rates. Although many current systems evaluate hospital visit data 1 day at a time, we investigate evaluating multiple days at once to lessen the effects of this unpredictability and to improve both the timeliness and sensitivity of detection. To test this approach, we introduce simulated disease outbreaks of varying shapes, magnitudes, and durations into 10 years of historical daily visit data from a major tertiary-care metropolitan teaching hospital. We then investigate the effectiveness of using multiday temporal filters for detecting these simulated outbreaks within the noisy environment of the historical visit data. Our results show that compared with the standard 1-day approach, the multiday detection approach significantly increases detection sensitivity and decreases latency while maintaining a high specificity. We conclude that current biosurveillance systems should incorporate a wider temporal context to improve their effectiveness. Furthermore, for increased robustness and performance, hybrid systems should be developed to capitalize on the complementary strengths of different types of temporal filters.

Bioterrorism↗

PubMed2003

Time series modeling for syndromic surveillance.

BACKGROUND: Emergency department (ED) based syndromic surveillance systems identify abnormally high visit rates that may be an early signal of a bioterrorist attack. For example, an anthrax outbreak might first be detectable as an unusual increase in the number of patients reporting to the ED with respiratory symptoms. Reliably identifying these abnormal visit patterns requires a good understanding of the normal patterns of healthcare usage. Unfortunately, systematic methods for determining the expected number of (ED) visits on a particular day have not yet been well established. We present here a generalized methodology for developing models of expected ED visit rates. METHODS: Using time-series methods, we developed robust models of ED utilization for the purpose of defining expected visit rates. The models were based on nearly a decade of historical data at a major metropolitan academic, tertiary care pediatric emergency department. The historical data were fit using trimmed-mean seasonal models, and additional models were fit with autoregressive integrated moving average (ARIMA) residuals to account for recent trends in the data. The detection capabilities of the model were tested with simulated outbreaks. RESULTS: Models were built both for overall visits and for respiratory-related visits, classified according to the chief complaint recorded at the beginning of each visit. The mean absolute percentage error of the ARIMA models was 9.37% for overall visits and 27.54% for respiratory visits. A simple detection system based on the ARIMA model of overall visits was able to detect 7-day-long simulated outbreaks of 30 visits per day with 100% sensitivity and 97% specificity. Sensitivity decreased with outbreak size, dropping to 94% for outbreaks of 20 visits per day, and 57% for 10 visits per day, all while maintaining a 97% benchmark specificity. CONCLUSIONS: Time series methods applied to historical ED utilization data are an important tool for syndromic surveillance. Accurate forecasting of emergency department total utilization as well as the rates of particular syndromes is possible. The multiple models in the system account for both long-term and recent trends, and an integrated alarms strategy combining these two perspectives may provide a more complete picture to public health authorities. The systematic methodology described here can be generalized to other healthcare settings to develop automated surveillance systems capable of detecting anomalies in disease patterns and healthcare utilization.

Bioterrorism↗

PubMed2003

The value of parental report for diagnosis and management of dehydration in the emergency department.

STUDY OBJECTIVES: We define the predictive value of parents' computer-based report for history and physical signs of dehydration for a primary outcome of percentage of dehydration (fluid deficit) and 2 secondary outcomes: clinically important acidosis and hospital admission. We also sought to compare the reports of physical signs related to dehydration made by parents and nurses. METHODS: We performed a prospective observational trial in an urban pediatric emergency department. A convenience sample of parents completed a computer-based interview covering historical details and physical signs (ill appearance, sunken fontanelle, sunken eyes, decreased tears, dry mouth, cool extremities, and weak cry) related to dehydration. Nurses independently completed an assessment of physical signs for enrolled children. The primary outcome was the degree of dehydration (fluid deficit), which was defined as the percentage difference between initial ED weight and stable final weight after the illness. Secondary outcomes included clinically important acidosis (defined as a serum CO(2) value of </=15 mEq/L) and hospital admission. RESULTS: One hundred thirty-two parent-child dyads comprised the final sample. Parent-reported data manifested higher sensitivity (range 73% to 100%) than specificity (range 0% to 49%) for the prediction of dehydration of 5% or greater. Likelihood ratios (LRs) near zero (<0.1) suggest that a normal history of fluid intake and urine output reduced the likelihood of significant dehydration. Parental report of a normal tearing state reduced the likelihood of significant dehydration and clinically important acidosis (negative LRs of 0.4 and 0.1, respectively). Two physical signs reported by parents, sunken fontanelle and decreased tears, were associated with hospital admission (positive LR of 3.4 and 4.0, respectively). CONCLUSION: Parents' report of history and observations for children captured through computer-based interview demonstrates predictive value for relevant outcomes in dehydration.

Adult↗

PubMed2003

Prolonged partial thromboplastin times in children with fever and petechiae without bacteremia or sepsis.

OBJECTIVES: In a prior uncontrolled study, 23% of children with fever and petechiae without bacteremia or sepsis had a prolonged partial thromboplastin time (PTT). We attempted to validate this finding by comparing the PTTs of children with fever and petechiae who were neither septic nor bacteremic with those of children without fever and petechiae. METHODS: Design. Secondary analysis of a prospective cohort with a newly identified retrospective control cohort. Setting. Emergency department of an urban pediatric teaching hospital from December 1993 to June 1995. Study group. All patients 1 month to 18 years old from a previously identified cohort with (1) fever (temperature >or=38.0); (2) petechiae; (3) prothrombin time and partial thromboplastin time performed in the emergency department (n = 273). Control group. Age-matched patients 1 month to 18 years old who presented to the emergency department during the same time period as the study patients with (1) an injury or other potentially surgical diagnosis; (2) neither fever nor petechiae; (3) prothrombin time and partial thromboplastin time performed in the emergency department. Main outcome measures. partial thromboplastin time and prothrombin time. RESULTS: 117 control patients were identified. Partial thromboplastin time was prolonged in 23% of study patients, but in only 6% of control patients (P < 0.001). Prothrombin time was prolonged in 9% of patients with fever and petechiae compared with only 4% of control patients (P = 0.09). CONCLUSION: Children with fever and petechiae without bacteremia or sepsis are more likely than controls to have prolonged partial thromboplastin time.

Adolescent↗

PubMed2003

Notifying emergency department patients of negative test results: pitfalls of passive communication.

OBJECTIVE: Many emergency departments that perform a high volume of group A Streptococcus throat cultures inform patients or parents that unless they are notified of a positive result they can assume that their throat culture result is negative. Thus, positive throat culture results are communicated actively and negative results are communicated passively. We sought to determine the effectiveness and safety of such a system. METHODS: Prospective cohort study of 301 consecutive patients who had group A Streptococcus throat cultures obtained between March 28, 2000, and May 10, 2000, in the emergency department of an urban, academic, tertiary-care children's hospital. Outcomes were determined by telephone surveys of patients or their parents or guardians. The primary outcome was whether respondents had accurate knowledge of the throat culture result. Secondary outcomes included receipt of appropriate treatment instructions, need for another telephone call to the emergency department or primary-care provider to clarify the result or treatment instructions, satisfaction with the communication process, and preference to receive both positive and negative results or just positive results. RESULTS: Fifty-three percent of respondents did not have accurate knowledge of the throat culture result, 5% received inappropriate treatment instructions, 13% sought further clarification, 29% were dissatisfied with the communication process, and 85% preferred to receive both positive and negative results. Parents of patients with positive results were more likely to have accurate knowledge of the result (odds ratio 6.9, 95% confidence interval 1.4-65.7) and to be satisfied with the communication process. CONCLUSIONS: Passive communication of negative throat culture results to patients seen in the emergency department can be unreliable. Active communication of both positive and negative results may improve patient knowledge and satisfaction and ensure appropriate therapy, but in the absence of automated notification systems, would be resource intensive.

Adolescent↗

PubMed2003

Effects on breastfeeding of changes in maternity length-of-stay policy in a large health maintenance organization.

OBJECTIVE: The purpose of this study was to evaluate the effects on breastfeeding rates of a private-sector early discharge program and a subsequent government mandate guaranteeing 48 hours of hospital coverage. METHODS: Interrupted time-series analyses were conducted on retrospective data from the automated medical records of a large health maintenance organization in eastern Massachusetts. A population of 20 366 mother-infant pairs with normal vaginal deliveries between October 1990 and March 1998 was identified. This study period spanned the 2 interventions of interest: 1) the introduction of a new health maintenance organization protocol of 1 postpartum overnight hospitalization followed by a nurse home visit for normal vaginal deliveries, then 2) Massachusetts state minimum coverage legislation. Breastfeeding initiation and breastfeeding continuation among initiators (exclusive or with supplements) into the third month of life were determined through a text search of the first 90 days of infants' automated medical records. RESULTS: Both policies had dramatic impacts on length of stay (LOS); postpartum LOS <2 nights rose from 29% of pairs to 65% when the early discharge program was implemented, then fell to 15% after the state mandate. Breastfeeding initiation, however, rose gradually from 71% in the fourth quarter of 1990 to 82% in the first quarter of 1998, with no changes after the interventions. Continuation of breastfeeding among those who initiated remained constant at 73%. Younger maternal age, primiparity, low socioeconomic status, and nonwhite race all were found to be risk factors for lower rates of breastfeeding (either initiation or continuation), but there was no evidence of a decline in breastfeeding associated with shorter LOS among these vulnerable groups. CONCLUSIONS: Early postpartum discharge with outpatient breastfeeding support and a home visitor program has no adverse effects on initiation or continuation of breastfeeding.

Breast Feeding↗

PubMed2003

Integrating syndromic surveillance data across multiple locations: effects on outbreak detection performance.

Syndromic surveillance systems are being deployed widely to monitor for signals of covert bioterrorist attacks. Regional systems are being established through the integration of local surveillance data across multiple facilities. We studied how different methods of data integration affect outbreak detection performance. We used a simulation relying on a semi-synthetic dataset, introducing simulated outbreaks of different sizes into historical visit data from two hospitals. In one simulation, we introduced the synthetic outbreak evenly into both hospital datasets (aggregate model). In the second, the outbreak was introduced into only one or the other of the hospital datasets (local model). We found that the aggregate model had a higher sensitivity for detecting outbreaks that were evenly distributed between the hospitals. However, for outbreaks that were localized to one facility, maintaining individual models for each location proved to be better. Given the complementary benefits offered by both approaches, the results suggest building a hybrid system that includes both individual models for each location, and an aggregate model that combines all the data. We also discuss options for multi-level signal integration hierarchies.

Bioterrorism↗

PubMed2002

Effects of a law against early postpartum discharge on newborn follow-up, adverse events, and HMO expenditures.

BACKGROUND: Concern about harm to newborns from early postpartum discharges led to laws establishing minimum hospital stays in the mid-1990s. We evaluated the effects of an early-discharge protocol (a hospital stay of one postpartum night plus a home visit) in a health maintenance organization (HMO) and a subsequent state law guaranteeing a 48-hour hospital stay. METHODS: Using interrupted-time-series analysis and data on 20,366 mother-infant pairs with normal vaginal deliveries, we measured changes in length of stay, newborn examinations on the third or fourth day of life, and office visits, emergency department visits, and hospital readmissions for newborns. We also examined expenditures for hospitalizations and home-based care. RESULTS: The early-discharge program increased the rate of stays of less than two nights from 29.0 percent to 65.6 percent (P<0.001). The rate declined to 13.7 percent after the state mandate (P<0.001). The rate of newborn examinations on the third or fourth day of life increased from 24.5 percent to 64.4 percent with the program (P<0.001), then dropped to 53.0 percent after the mandate (P<0.001)--changes that primarily reflected changes in the rate of home visits. The rate of nonurgent visits to a health center increased from 33.4 percent to 44.7 percent (P<0.001) after the reduced-stay program was implemented. There were no significant changes in the rate of emergency department visits (quarterly mean, 1.1 percent) or rehospitalizations (quarterly mean, 1.5 percent). Results were similar for a vulnerable subgroup with lower incomes, younger maternal age, a lower level of education, or some combination of these characteristics. Average HMO expenditures on hospital and home-based services decreased by $90 per delivery with the early-discharge program and increased by $100 after the mandate. CONCLUSIONS: Neither policy appears to have affected the health outcomes of newborns. After the mandate, newborns were less likely to be examined as recommended on day 3 or 4. Because of changes in hospital prices, the two policies had minimal effects on HMO expenditures for hospital and home-based services.

Adult↗

PubMed2002

Newborn screening program practices in the United States: notification, research, and consent.

OBJECTIVE: To define current practice among US newborn screening programs for notification of results, research, and consenting procedures. METHODS: A telephone survey of all US newborn screening program supervisors. RESULTS: All 51 programs participated. All states reported abnormal results to the infant's physician, and some also reported to the hospital and parents. Cases with abnormal results were tracked to different endpoints but usually (92.1%) at least until a follow-up appointment was made. A total of 66.6% of programs can communicate with programs in other states; 9.8% enable families to suppress reporting of results to the infant's physician. No state has a mechanism for parents to prevent results from entering the medical record. Parents or physicians who request results are often authenticated by providing their name (52.9%). Many programs (45.1%) report only to physicians and require just their name (43.5%), an identification number (17.4%), a letter (26.1%), or a parent's signature (26.1%). A total of 70.6% retain residual blood samples; of these, only 8.3% store them completely devoid of patient identifiers. A total of 49.0% of programs aggregate data for research. In 16.0% of these, the data are publicly available. In 24.0%, researchers obtain approval at their own institution; in 24.0%, researchers obtain approval through the state laboratory Institutional Review Board. In 74.5% of programs, parents are notified but not asked for consent before collection of the sample; 19.6% neither notify parents nor obtain consent before screening. CONCLUSIONS: There is wide variation in practice among the US newborn screening programs. Because the programs collectively manage a comprehensive nationwide genomic databank, careful consideration of how information technology and high-throughput genomic analysis are used will be essential to allow progress in clinical care, public health, and research while protecting individual privacy.

Communicable Disease Control↗

PubMed2002

Effect of an imaging protocol on clinical outcomes among pediatric patients with appendicitis.

OBJECTIVE: In 1998, we implemented a clinical imaging protocol in which children with suspected appendicitis underwent ultrasonography (US) followed by computed tomography (CT). We sought to determine the impact of the US-CT protocol on changes in perforation and negative appendectomy rates. METHODS: Children with unequivocal presentations for appendicitis went to the operating room without entering the imaging protocol. Using a modified time series design, we analyzed a prospective and retrospective cohort of consecutive patients who were admitted from the emergency department for suspected appendicitis. The perforation and negative appendectomy rates were computed for the periods before and after implementation of the imaging protocol and adjustment for time trends was made. RESULTS: A total of 1338 children were identified. Eight hundred ten (60.5%) children had equivocal clinical findings. A total of 920 patients were admitted for suspected appendicitis before the protocol was implemented; 526 (57.2%) of the 920 children had appendicitis, and 186 (35.4%) of them had perforation. A total of 91 (14.7%) of 617 had negative appendectomies. After the protocol was implemented, 418 patients were admitted for suspected appendicitis; 328 (78.5%) had appendicitis with 51 (15.5%) perforated. There were 14 (4.1%) of 342 cases of negative appendectomies. After implementation of the imaging protocol, the perforation rate decreased from 35.4% to 15.5%, and the negative appendectomy rate decreased from 14.7% to 4.1%. After secular time trends were adjusted for, the imaging protocol continued to have a strong association with a reduction in perforation rate and negative appendectomy rate. CONCLUSION: The implementation of an imaging protocol using US and CT resulted in a marked decrease in the perforation and negative appendectomy rates in children with suspected appendicitis.

Adolescent↗

PubMedDate not supplied

Integrating medical informatics and health services research: the need for dual training at the clinical health systems and policy levels.

Reams of data pertaining directly to the core health services research mission are accumulating in large-scale organizational and clinical information systems. Health services researchers who grasp the structure of information systems and databases and the function of software applications can use existing data more effectively, assist in establishing new databases, and develop new tools to survey populations and collect data. At the same time, informaticians are needed who can structure databases that serve the needs of health service research and who can design and evaluate applications that effectively improve health care delivery. As long as health services researchers and informaticians work in separate spheres, however, opportunities to use data from health care encounters to improve care, expand knowledge, and develop more effective policies will be missed. This paper provides a brief exploration of 1) existing successful collaborations between health services researchers and informaticians and 2) needs and opportunities for additional joint work in several core research areas.

Curriculum↗

PubMedDate not supplied

Roundtable on bioterrorism detection: information system-based surveillance.

During the 2001 AMIA Annual Symposium, the Anesthesia, Critical Care, and Emergency Medicine Working Group hosted the Roundtable on Bioterrorism Detection. Sixty-four people attended the roundtable discussion, during which several researchers discussed public health surveillance systems designed to enhance early detection of bioterrorism events. These systems make secondary use of existing clinical, laboratory, paramedical, and pharmacy data or facilitate electronic case reporting by clinicians. This paper combines case reports of six existing systems with discussion of some common techniques and approaches. The purpose of the roundtable discussion was to foster communication among researchers and promote progress by 1) sharing information about systems, including origins, current capabilities, stages of deployment, and architectures; 2) sharing lessons learned during the development and implementation of systems; and 3) exploring cooperation projects, including the sharing of software and data. A mailing list server for these ongoing efforts may be found at http://bt.cirg.washington.edu.

Bioterrorism↗