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7 Knowing What Is Happening and What is Needed: Planning, Evaluation, and Research The goal of emergency medical services for children (EMS-C) is to achieve the best possible outcome for all acutely ill and injured children by rapidly and accurately assessing their medical needs and then providing access to the appropriate care. Those services have to be effective from both a medical and a cost perspective to ensure that the available resources can support the maximum amount of care. The three previous chapters have identified steps that the committee believes must be taken regarding education and training, organization and delivery of care, and communica- tion to ensure that children across the country have access to optimal emer- gency care. Those steps are, however, only part of what needs to be done. There is widespread agreement that more and better EMS-C data and data systems are needed. The information resources that are currently available are too limited, scattered, and unconnected to support the planning and evaluation that EMS-C needs. Without a broad and reliable base of infor- mation, it is hard for anyone emergency care providers, administrators, parents, policymakers to determine in any systematic way how successful EMS-C systems are in providing appropriate, timely care or what they ought to do to improve performance and patient outcomes. This committee believes that not all children are getting the emergency care that they need, but that the full extent and nature of the problem is not known. Assembling descriptive data that will make it possible to answer basic questions about EMS-C systems, patients, and care and to provide accountability for EMS-C system functions must, therefore, be a high prior- ity. In addition, research is needed to establish sound clinical and organiza 224

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PLANNING, EVALUATION, AND RESEARCH 225 tional principles for the care that children are given and the ways it is provided. Since routine information gathering appropriate for planning and evaluation activities often is not sufficient to meet the needs of research activities, special data collection efforts are needed to add to the knowledge base for EMS-C. This chapter addresses issues of the eollect~' analysts' and use of data for planning and evaluation. It discusses actions recommended by the com- mittee to improve the quality and comprehensiveness of EMS-C data and gives special attention to creation of a national uniform data set for EMS-C. The chapter closes with recommendations for key elements of a broad re- search agenda in this field. UNDERSTANDING THE INFORMATION GAP information gathering for planning and evaluation purposes ideally would be aimed at EMS-C systems, but the initial step is to compile data on the particular role that individual system components play in emergency care. When it is possible to take the next step of linking those data, a much more comprehensive picture of emergency care will emerge. The following ques- tions reflect the committee's central concerns: What is the structure of the system? Data on the numbers and characteristics of the facilities, emergency care providers, and services available in the system establish the context in which a system provides emergency care. Who uses the system? Data on the demographic characteristics of the patient population such as age, sex, and residence (or location of emer- gency) are essential for understanding who needs care.) For what is the system used? Data on the illnesses and injuries that bring children into the emergency medical services (EMS) system and on their condition (e.g., level of consciousness) establish the epidemiology of . . . pet latrlc emergencies. What services or procedures are provided to a patient? These data are the basis for describing the process of care in an EMS system. When are services provided? In the EMS context, time intervals in various stages of care can be significant elements of the process of care. What are the outcomes of using the system? Clinical outcomes based on functioning, patient well-being, morbidity, and mortality are of interest; so are process outcomes, such as hospital admission or referral to a tertiary care facility. What are the global costs of the system? Both the direct and indirect economic costs of operating EMS-C systems, as well as the monetary sav- ings over time that may be realized by successful expansion of EMS-C and integration into EMS systems, are of interest. .

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226 EMERGENCY MEDICAL SERVICES FOR CHILDREN With good descriptive data, planners, evaluators, and researchers can begin to answer the more significant question: How well does the system perform? Performance can be judged on the basis of outcomes or processes of care for individual cases and for populations. Clinical outcomes can be assessed across a broad spectrum (from basic physiologic and biologic mea- sures through health-related quality of lifer- ideally with severity or acuity adj-~stn~ents using appropriate tools such as those discussed In Appendix A at the end of this chapter. Various elements of the process of care such as appropriateness of triage, timeliness of treatment, or completeness of docu- mentation can be evaluated. Compliance with structural guidelines, such as provider qualifications or equipment available, is another evaluation crite- rion that can be used. Cost-effectiveness must be a consideration as well. The assumption in evaluating system process and structure is that deficien- cies in those areas are likely to have an adverse impact on the ultimate results of the care that children (or adults) receive. Even this assumption can be tested only when data exist. The need for more and better data on the volume, nature, and outcomes of emergency care and the operation of emergency care services has been widely recognized for many years (NAS/NRC, 1970a, 1978a, 1980; MacKenzie, 1989; Eisenberg et al., 1990; Lescohier et al., 1990; IOM, l991b; Seidel and Henderson, 1991; CDC, 1992b). Progress in improving data resources has been limited, however. As was noted in Chapter 2, much of what has been learned about EMS-C, including the work discussed in this report, is based on one-time studies or studies in a single institution or community, which raises problems of external validity and generalizability of the results. Nevertheless, conclusions and policies are based on these studies simply be- cause more broadly based information on the structure and operation of EMS systems, and especially on outcomes of care, is not widely available. Some individual hospitals, state and local EMS agencies, and emer- gency dispatch centers that are parts of EMS systems do have sophisticated data collection and analysis programs that generate valuable information. EMS systems, however, depend on successful coordination of services from many separate components; only rarely are these individual components able to link their data together to learn more about the complete course of a patient's emergency care. By contrast, trauma registries are able to compile detailed information on all phases of patient care but only for a small por- tion of the patient population cared for by EMS systems; they too may lack certain elements such as linkages with autopsy reports or rehabilitation fa- cilities. Even comparisons among similar kinds of system components are difficult because little or no consensus exists on how important concepts are defined or on what data are needed to operationalize those concepts. Fur- thermore, data that might already be deemed appropriate are not routinely compiled or published.

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PLANNING, EVALUATION, AND RESEARCH 227 Efforts to ensure the best possible outcomes for children are also hin- dered by limitations in the clinical and health services research base. In EMS, much research is still needed to understand the clinical merits of various current practices arid to develop better ways to apply what is known. Much of the needed research demands specialized data, but some work might be done with better EMS and EMS-(: data on system structures opera- t~onal processes, and patient outcomes. Assessing the costs and cost-effectiveness of erne-rgency care and EMS systems must be a priority in times of fiscal constraint, but accurate, com- prehensive, and meaningful data are difficult to obtain. Billing information, for example, can be obtained from hospitals and insurers, but the charges assessed for services are not equivalent to the cost of providing that service. Furthermore, system costs extend far beyond the immediate care of indi- vidual patients to the overall operation of EMS agencies and hospitals. With services provided by widely varying combinations of public and pri- vate sector organizations, ways are needed to aggregate highly diverse forms of cost data. Four aspects of this information gap can be singled out for special emphasis. First, to use a conceptual framework from the health care quality assurance field, information on "structure, process, and outcomes" for EMS- C systems is critical.2 Second, ways to use information about EMS to highlight prevention needs and target related activities efficiently must be devised. Third, questions about individual components of an EMS system and about the system as a whole must be addressed. This in turn implies that information on individual patients must be available across settings and providers; thus, being able to link records is a significant requisite. Fourth, EMS-C data are needed at the local, state, and national level; the particular kinds of data needed at each level may vary, but in all cases, data collected for one level (e.g., national) should be useful at every level below that (e.g., states and localities). These points should be kept in mind in reviewing the strengths and weaknesses of current data systems discussed later in this chapter. To answer the questions and fill the information gaps posed above, three activities must receive attention. PLANNING, EVALUATION, AND RESEARCH This committee regarded planning and evaluation as lying at the heart of effective implementation: planning is required to determine how the health care system can best meet children's needs for emergency care, and evaluation is needed to assess how well that care is being delivered. It also regarded research as essential to validate the clinical merit of care that is given, to identify better kinds of care, to devise better ways to deliver that care, and to learn where best to direct prevention activities.

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228 EMERGENCY MEDICAL SERVICES FOR CHILDREN This chapter discusses the importance of planning and evaluation with a particular emphasis on matters related to data and data systems. The com- mittee is not aiming to address here the details of specific data collection technologies. Rather, it is looking more broadly at the need to assemble a core of nationally comparable data on pediatric emergencies and emergency care and at special concerns about the Chit? reliability' and validity of Norma derived Mom data collection and analysis efforts; as a part of this topic, the committee advances ideas for a uniform national EMS-C data set. It then turns to research, outlining priority issues for a comprehensive research agenda. The underlying theme is that all three tasks planning, evaluation, and research require access to data, analytical resources to transform those data into meaningful information, and ways to use and disseminate the information to improve the care that children receive. Planning Planning is a crucial step and cannot be completely divorced from ei- tner research or evaluation. Planners need up-to-date descriptive informa- tion about the current state of affairs (together with a sound idea of where they want to be in the future) in a number of areas. Among these areas are epidemiology of injury and illness in the geographic area and population for which the EMS system is responsible; facilities, agencies, services, and related equipment and personnel; financial and other resources to support and maintain those providers and programs; and EMS training and retrain- ing needs. Planners need information that will help them improve the use of available resources (hence the link to evaluation), often in fairly short time frames; taking a longer perspective, they must develop sound argu- ments to justify requests for increased resources. Evaluation Evaluation is concerned with understanding whether value has been received for the resources expended on an enterprise; more formally, evalu- ation determines "what outcomes desired and undesired, anticipated and unanticipated have occurred as a result of a policy or program i" (IOM, 1990a, p. 91~. This encompasses assessments of quality of care, efficacy and effectiveness, efficiency, and new program directions and practices. EMS-C evaluation must address at least three concerns. First, it should seek to know whether the system is "doing things right": for example, whether the existing full range of services, from prehospital care through definitive inpatient and outpatient care through rehabilitation and counsel- ing, as well as prevention, has been of high quality and whether certain practices or interventions could be improved. This essentially involves a

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PLANNING, EVALUATION, AND RESEARCH 229 series of quality-of-care questions (IOM, 1990b): Have all appropriate and necessary services been provided, and inappropriate and unnecessary ser- vices not provided? Have the technical and interpersonal aspects of care been adequate? These questions can be addressed through assessments of both the process and the outcomes of care, and problems can be tackled through form al programs of equality assurance and improve-men/.3 A related question is whether the system is *`doing the right things. This in turn calls for directly assessing the effectiveness Elf not the efficacy) of services and interventions and using sound practice guidelines, protocols, and criteria to determine the appropriateness and necessity of care. It also may involve eliminating unnecessary processes and practices. Effective- ness must be assessed from a cost standpoint as well as from a clinical one. Second, evaluation should be concerned with how efficiently services are being provided. Here questions might focus on whether various opera- tions dispatch, transport, patient transfer, communications and medical con- trol, and so forth are functioning optimally, without undue duplication or wasted effort and without significant gaps or lapses. A third area of evaluation underscores the link to planning as well as to the quality and efficiency questions just posed. Specifically, evaluators need to address systematically a variety of questions about the effects of changing practice and doing new things. These matters often call for longi- tudinal analyses. The importance of cross-sectional analyses should not be lost, however, insofar as regional or facility comparisons need to be made and differences understood; serial cross-sectional data can show patterns over time. Research Planning and (especially) evaluation clearly overlap with research, but important distinctions should be noted. Perhaps the most obvious is that research is often intended to answer relatively specific, detailed, or basic questions that are separate from day-to-day system operations of a program or service. EMS-C research questions cover a wide spectrum: for instance, elucidating biologic factors that contribute to the success or failure of basic or advanced life support (BLS, ALS) interventions in children, developing improved injury and illness acuity measures for children, investigating the etiology and epidemiology of childhood trauma or illnesses that account for the major part of EMS calls, predicting the emergency care needs of chil- dren with chronic or disabling illnesses, assessing outcomes of emergency care over time, or investigating factors that make public education cam- paigns about safety and healthy lifestyles successful. Thus, compared with planning and evaluation for EMS and EMS-C system operations, research asks new and different questions and requires rigorous and specialized study

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230 EMERGENCY MEDICAL SERVICES FOR CHILDREN design, data collection, and analysis. Costs must not be overlooked; con- ducting studies that are clinically and statistically meaningful can be expen- sive. For purposes of this chapter, the common thread through these activi- ties is data and information. EMS-C data are now available from an assort- ment of sources? but each source provides only a particular type of data; coord~aticT~ among sources ~s usually minimal. There is also no consis- tency across EMS systems in whether data on similar activities will be collected. The next sections briefly review selected sources and limitations of data related to EMS-C and present several committee recommendations concerning coding, data collection, and a national uniform data set. The chapter then considers a research agenda for EMS-C. UNDERSTANDING CURRENT AND EMERGING SOURCES OF DATA AND DATA SYSTEMS Strengths and Weaknesses In principle, data on emergency medical care for children and the sys- tems through which it is provided are available from an assortment of sources. Those different data systems have different advantages and disadvantages, and in no case can one source provide the full range of information needed for the planning, evaluation, and research activities discussed earlier. Prehospital Services Various approaches are used in collecting information on prehospital services. Dispatch centers, which are the first point of contact for most prehospital care, generally maintain information on the nature and timing of the calls they receive and on the response to those calls. The use of en- hanced 9-1-1 and computer-assisted dispatch systems provides dispatch ser- vices with increased data capture capabilities. EMS agencies often have extensive data collection systems that capture information about the vehicles and the personnel that respond, patients and their conditions, treatments used, time intervals in stages of prehospital care, and where patients are taken for further care. Where they are re- ported, these data are a resource for assessing patient care and system op- erations. More than 40 states have developed ambulance reporting forms (although the information on them is not always forwarded to central or state offices); 29 states have some form of statewide data gathering system (chiefly but not exclusively on ambulance runs); a few states more or less systematically acquire regional or county data, do periodic surveys, or have statewide data collection programs under development or revision (Emer

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PLANNING, EVALUATION, AND RESEARCH 231 gency Medical Services, 1992~. Thus, a substantial number of states have essentially no reporting requirements at all. Local or regional data collec- tion systems often exist, with or without statewide data collection. Because there is no widely accepted "standard" EMS data set, it is difficult to inte- grate data from separate systems. Cutting across all these points are the questions, often hard to answer? as to whether data are retrievable' reliable, and -valid. Hospitals Emergency Departments EDs are an especially important source of information about emergency medical care for children. They have the potential to produce the broadest array of data on emergency care because many patients receive no prehospital or inpatient services. In addition, learning more about ED care provided to children who are not seriously ill or injured is important, in part to understand better the demands on the EMS system and in part to clarify the barriers to access to primary care that form a crucial part of the health care reform debate in this country. National data on ED services will become available for the first time through the National Hospital Ambulatory Medical Care Survey (NHAMCS), a new annual survey being conducted by the National Center for Health Statistics (NCHS) of the Centers for Disease Control and Prevention (CDC), U.S. Department of Health and Human Services (DHHS). Results for 1992 should be available in late 1993 (although the sample size is too small to provide estimates for individual states or local areas). Currently, systems such as the National Electronic Injury Surveillance System (NEISS) and the Drug Abuse Warning Network collect data only on specific kinds of ED visits. Without more comprehensive ED reporting, it is difficult to track an individual, chief complaint, or type of call through the system; to assess EMS system performance; or to make comparisons among EDs. (Even if complete ED data were available, those emergency cases in which patients were admitted immediately on arrival at the hospital would not be identi- fied.) The usefulness of ED records depends not only on their accessibility but also on the adequacy of the clinical information they contain. Com- pared to prehospital data systems, the content and management of ED records are rarely addressed in the emergency medicine literature. An unpublished study conducted for the Wisconsin EMS-C demonstration project (one of those supported by the Health Resources and Services Administration tHRSA] in DHHS) found that some hospital information systems that recorded in- jury cause and ambulance information for ED registration did not include the information in the electronic medical record (Karlson and Eisenberg, 1990~. The investigators also determined that hospital billing records for

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232 EMERGENCY MEDICAL SERVICES FOR CHILDREN ED patients may not include information routinely reported for inpatients (e.g., discharge status) because that information is not required by third- party payers. The patient's hospital record usually includes the missing information, but no systematic use is made of it. The investigators quote one hospital source to the effect that discharge status "would be 'easy to capture if there were some use for it"' (KarIson and Fisenl'erg' 1990- p. 10~ Inpatient Services Full inpatient records capture (in principle) more of the essential clinical information. The current state of paper-based medical records is quite lamentable, but greater use of computer-based record sys- tems (IOM, 1991a) will make much of that information more accessible. Apart from information in the hospital records of individual patients, useful information may be retrieved through various databases created from sample surveys and discharge abstract reporting systems. The National Hospital Discharge Survey (NHDS) of the NCHS, for example, collects information from a sample of acute care hospitals across the country on patient charac- teristics, diagnosis, treatment, and disposition at discharge. As was noted regarding the NHAMCS, the NHDS is not designed to provide state or local estimates. Thirty states, however, maintain their own discharge data sets; billing data are the basis of discharge reporting for 23 of these 30 states (CDC, 1992a). Discharge data are especially useful in studying injury because the di- agnostic categories describing the nature of an injury (e.g., head injury, burn, fracture) are readily identifiable. Six states also require that discharge reports with injury diagnoses include separate external cause-of-injury codes (so-called E-codes from the ICD-9-CM tInternational Classification of Dis- eases, ninth revision, clinical modification]), such as for falls, motor ve- hicle crashes, and assaults (CDC, 1992a). Adding E-codes to discharge data enables researchers, policymakers, and others to use the data in planning and assessing injury prevention efforts. Provisions for reporting E-codes are also being made in the newly revised standard hospital billing form- the "UB-92," which should be available for use in 1993 (CDC, 1992a). Discharge data tend to be more useful in studies of injury than in studies of illness because reliable methods have not been developed to identify, through ICD-9-CM diagnostic codes or other means, children hospitalized for emer- gency treatment of illness. For all patients, however, mortality reflected in discharge data is lim- ited to deaths occurring in the hospital. Children who are declared dead outside the hospital and are not transported to the hospital will not be included in discharge statistics and analyses a fact that could seriously distort conclusions and policy actions taken on the basis of such findings. One study, for instance, determined that 24 percent of pediatric injury deaths in an urban area were not seen in hospitals (Cooper et al., 1992~. Such

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PLANNING, EVALUATION, AND RESEARCH 233 deaths must be identified by other means if the aim is to estimate overall mortality from injury or illness severe enough to require emergency care. Analysts also must be cautious about using discharge data to estimate the incidence of injury or illness requiring hospitalization, lest children who are transferred after admission or who are readmitted for follow-up care be counted more than once. Efforts by the loins Commission on Accreditation of Healthcare Organi- zations (JCAHO) to incorporate ongoing monitoring of hospital performance into its approach to accreditation is likely to lead to new, targeted data collection in order to report specific performance indicators (JCAHO, 1987, 1988; Jurkiewicz, 1988; O'Leary, 1991~. Trauma care is one of the areas for which indicators are now being tested. For example, an indicator of the appropriateness of airway management of comatose trauma patients is the proportion of such patients who are discharged from the ED before a me- chanical airway is established (JCAHO, 19911. A set of data elements needed to determine performance on the indicators has been identified. How efficiently and effectively data amassed through this mechanism might be used in EMS and EMS-C planning, evaluation, or research on a broad scale remains to be seen. Trauma Registries Many hospitals maintain trauma registries that capture detailed infor- mation on the care and outcomes of patients admitted with traumatic inju- ries. Where trauma systems have been established, a registry may cover all the hospitals participating in the system. A few statewide registries also exist. Unlike many other emergency care data systems, trauma registries typically include data on prehospital and hospital care. The CDC advises inclusion of core data elements in seven categories (Pollock and McClain, 1989~: demographic and identifying data; incident description; prehospital care; ED care; surgical care; anatomic diagnosis; and outcome data. Software packages are now available that permit hospi- tals to manage their registries on personal computers.4 Two long-term efforts have been made to collect data on an even broader basis to help evaluate trauma care. The Major Trauma Outcome Study (MTOS) uses data from 139 hospitals to establish broad characteristics of trauma and to develop national norms for severity-adjusted survival (Cham- pion et al., 1990b). By 1987, it had demographic, etiologic, severity, and outcome information on more than 80,000 patients of all ages; of these, just over 10 percent were pediatric patients. MTOS data have been used to calculate severity indexes and outcome norms (e.g., for probability of sur- vival) for adults and for children and to analyze topics such as causes of injury, death rates, and lengths of hospital stays.

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234 EMERGENCY MEDICAL SERVICES FOR CHILDREN The National Pediatric Trauma Registry (NPTR) has focused specifi- cally on the trauma experience of children (Tepas et al., 1989~. A multi- institutional shared database designed to compile and evaluate information on all aspects of pediatric trauma care, it began in 1985. By mid-1992 it nap co~tectect Information on more than 36,000 children from 61 participat- ing centers. These data are available to any participating investigator (with ce-na~n provisos concerning publication). For example, studies on use of helicopter transport, incidence of discharge disabilities and impairments, and referral patterns for trauma centers have all been conducted using this database, and pediatric-specific trauma score norms have been generated. As valuable as trauma registries are in studying the nature and quality of trauma care, they capture data on only a limited portion of the children who suffer serious injury. As with discharge data, information on children who die outside the hospital is not incorporated into these files. Those children with traumatic injuries who are cared for in hospitals that do not maintain a trauma registry or contribute to a trauma system registry are also missed as are children treated only in the ED. The absence of these cases from the data set makes comparing outcomes of care in a trauma system with outcomes in other hospitals impossible. Similarly, investigators can- not determine from the registry whether the children who were treated out- side the trauma system were appropriately triaged. Findings from work based on the data in the two trauma registries mentioned above have not resolved a key issue in this field namely, whether pediatric-specific injury or severity scales are necessary or whether mea- sures for adults (perhaps reweighted or recalibrated in certain ways) will suffice. The discussion in Appendix 7A also touches on this controversy, and the material below about data validity reflects a similar debate about severity-of-illness measures. Generally, the committee believes that continued support for national or comprehensive regional databases of these sorts might facilitate progress in these areas, for instance by fostering the development and validation of objective outcome assessment measures (for death, disability, and quality- of-life domains) or the implementation of prospective clinical trials (e.g., on different methods for initial resuscitative care). Expansion and refine- ment of demographic and epidemiologic data sets also may help provide ongoing statistical support for development and evaluation of regionalized systems of pediatric trauma care. Ideally, given the comparative lack of information on childhood illness, such databases might even be expanded to include pediatric medical emergencies. , . .. . ~ . ~ .. Health Insurance Claims and Administrative Data Sets Claims data are increasingly used in research on variations in the use of

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PLANNING, EVALUATION, AND RESEARCH 269 leagues (1986) showed, for instance, that the sensitivity and specificity of the TS (for correctly identifying patients needing or not needing to be trans- ported to a trauma center) are highly influenced by the specific TS score selected to indicate "severe" injury. They present data to suggest that the TS may well identify patients likely to have severe injury, but it may also have some [~1~-negatives arid miss patients with major thoracic injury; in addition, problems of undertriage or overtriage may differ depending on whether the injury reflects penetrating or blunt trauma. Baxt et al. (1989) determined that the TS, RTS, CRAMS, and Prehospital Index (PHI) could accurately predict which trauma victims would die but that they could not accurately pinpoint which patients of those who initially appeared physi- ologically normal (in the prehospital setting) were in fact victims of major trauma (i.e., could not distinguish major from minor trauma injury). Kane et al. (1985) evaluated several existing measures (e.g., the TS) and some new instruments for triage and concluded that "the most striking finding . . . is the disappointing performance of all [emphasis in original] the triage techniques studied" (p. 4881. They question whether methods based on rigidly defined variables can achieve high sensitivity, high specificity, and positive predictive validity, and they propose that the reliability of para- medic observation itself might deserve further exploration. By contrast, Eichelberger and various colleagues (Eichelberger et al., 1989b) have developed evidence from a pediatric database (0 to 14 years) that the TS, PTS, and unweighted RTS have an acceptable sensitivity for triage decisions (e.g., whether to transport a child to a pediatric trauma center), although the last-named may have a less acceptable specificity. As noted above, the PTS has been shown to have good predictive validity when used for trauma triage in the field, and Tepas (1992) argues that a tool such as the PTS may have its "greatest applicability in . . . [improving] care for the rural population" (p. 1769. Not all experts in the field argue so strenuously for the use of formal trauma or triage tools. Emerman and colleagues (1991), for example, re- ported that, in one metropolitan area, EMTs' judgments about overall sever- ity of trauma and predictions of mortality and need for immediate operative intervention were as accurate as scores from the triage-revised TS, the PHI, and CRAMS. (This point would seem to accord with the sentiments ex- pressed by Kane et al., 1985.) With respect to triage-transport decisions, Orr and colleagues (1992) comment that the PTS (as well as the GCS and MISS) "may prove useful for certain categories of patients, such as those with multiple trauma or necrologic disease" (p. 1573~. Overall, therefore, the evidence about the application of trauma severity measures in triage seems to be mixed; relatively poor performance in predicting major trauma for adults will likely be worse for pediatric patients.

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270 Mortality Predictors EMERGENCY MEDICAL SERVICES FOR CHILDREN Some measures, such as the Pediatric Risk of Mortality (PRISM) score (Pollack et al., 1988b) and TRISS (Eichelberger et al., 1988b), can help identify unexpected (i.e., potentially preventable) deaths as well as unsurvivable injuries (i.e., expected deaths). At least one study, however, suggests that -trauma scoring systems based on AlS and ISS, when used for pediatric patients, may overestimate the "non-salvageable" population in that age group, perhaps because of overemphasis on head injury or limitations of the original evaluation; some children so designated do survive, and at least some of those who do have a high probability of good long-term functional outcomes (Jaimovich et al., 1991~. Generally, the state of the art of mortal- ity prediction among injured children, which relates directly to ongoing debates about the adequacy of trauma scoring systems for pediatric patients, remains in flux. Questions about mortality measures are pertinent to efforts to evaluate pediatric trauma programs. One issue centers on whether "preventable death rate" (PDR, the proportion of all deaths that could have been avoided had care been optimal) or"effectiveness" (E, the proportion of severely injured patients who were salvageable and survived, which excludes those who would be expected to die despite optimal treatment) is the better evaluative measure. Wesson and colleagues (1988), for instance, have argued that the PDR is sensitive to case mix which in turn would be sensitive to the injury severity index used and that E would be a superior way to assess how well a pediatric trauma program was functioning, but commentary on the work suggests that the issue is not resolved. ILLNESS MEASURES Scoring systems to assess the severity of pediatric illness, particularly in the prehospital setting for triage purposes, or to predict the outcome from illness, have proven even more difficult to develop than those available for trauma. Indeed, the committee recognizes that no reliable or valid illness severity scores exist that could be universally applicable for illness assess- ment of all pediatric patients. The following discussion provides a brief overview of some of the major illness measures presently available, but it is not all-inclusive. For example, disease-specific scores that are used in pediatric emergency care, such as for asthma, croup, or meningococcemia, are not discussed. As with trauma and injury scores or other physiologic measures that, in theory at least, reflect illness acuity, most illness severity measures have been developed and used for adult patients in a general hospital population. They tend to be "global" measures (in much the same way that trauma or

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PLANNING, EVALUATION, AND RESEARCH 271 injury can be considered a "global" or "generic" condition), rather than disease- or condition-specific. Not surprisingly, they may often not be appropriate for pediatric patients. Selected Measures General Illness-Related Measures Iezzoni (1991) provides a definitive review of measures to standardize (i.e., adjust for) severity of illness, especially in their role in research, quality assessment, and health policy work. Among the better known sever- ity-adjustment tools are the following: Acute Physiology and Chronic Health Evaluation (APACHE and APACHE II) (Knaus et al., 1981, 1985~; the Computerized Severity Index (Horn and Horn, 1986; Averill et al., 1989~; the disease staging methodology (Gonnella et al., 1976,1984; SysteMetrics, 1988~; MedisGroups (Brewster et al., 1985; Iezzoni and Moskowitz, 1988~; and Patient Management Categories (Young et al., 1982; Young, 1984~. Measures that are well known for or used for trauma and injury but are also regarded as applicable to illness include the PHI (Koehler et al., 1986), the Physiologic Stability Index (PSI) (Yeh et al., 1984), and the Therapeutic Intervention Scoring System (TISS) (sullen et al., 1974; Yeh et al., 1982~. Pediatric Measures Certain pediatric instruments can also reflect both illness and injury severity. For example, PRISM (Pollack et al., 1988b; Pollack, 1993) is a simplification of the PSI; one variant (Dynamic Objective Risk Assessment, or DORA) uses multiple PRISM scores to assess worsening or improving levels of severity of illness (Ruttimann et al., 1986; Ruttimann and Pollack, 1991~. A pediatric version of the Glasgow Coma Scale has been proposed (Reilly et al., 1988~. The Maryland EMS-C Project (1992) developed a preliminary version of a Pediatric Severity Assessment Tool (PSAT) that is designed to be ap- propriate for prehospital providers as well as clinicians in community hos- pital EDs and physicians' offices. Its designers intend that it quickly iden- tify patients who need various levels of emergency care without having to resort to much in the way of laboratory data (except perhaps for an electro

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272 EMERGENCY MEDICAL SERVICES FOR CHILDREN cardiogram or pulse oximetry reading). The PSAT is still undergoing field testing. For children, the greatest success has occurred in formulating measures that assess mortality risk or the "intensity" of the care needed by the most critically ill (or injured) children; these include PRISM, PSI, and TISS. (BuGhert and Yeh. 1992' review some of the prehospital illness scoring measures.) For severity of zIIness measures, a variety of physiologic and behavioral indicators respiratory rate, fever, lethargy, irritability contrib- ute to assessments of severity of illness. Children, especially younger ones, may not manifest ordinarily well-known signs and symptoms of the ill- nesses they have, so a measure that would indicate which children require laboratory evaluation to rule out serious or life-threatening illnesses and which children have only minor ailments will be useful. One such measure what has come to be called the Yale Observation Score was developed by McCarthy et al. (1982) in an attempt to identify items that could be used to help clinicians recognize, reliably, validly, and quickly, serious illnesses in children with fever. The model includes six observation items (quality of cry, reaction to parent stimulation, variation in awake-asleep status, color, hydration, and response to social overtures), each scored on an item-specific three-point scale (normal, moderate impair- ment, severe impairment). One test in the hospital ED setting raises ques- tions, however, as to whether this scale, even in the hands of experienced physicians, will provide sufficient information to identify serious febrile illness in very young infants (Baker et al., 1990~. The "SAVE A CHILD" triage approach, based on a simple mnemonic (skin, activity, ventilation, eye contact - abuse - cry heat immune system level of consciousness and _ _ , _ , , , dehydration) is another example of a protocol for EDs intended to provide markers of possibly serious illness (Wiebe and Rosen, 1991~. The "SAVE" part of the triage guide involves simple observations, and the "A CHILD" portion involves observations and simple history questions; in total, it takes less than one minute to complete, and its developers thus claim that it would be particularly valuable for busy EDs. Comment Generally, it can be said that generic or global measures of acuity or severity of illness in children lag those for trauma and injury by a consider- able degree. In view of the evidence presented in Chapter 2 about the extent to which illness is the reason that children (especially younger chil- dren) require emergency care, this is a major gap in the tools available to EMS-C personnel, researchers, and evaluators. In addition, measures other- wise considered reasonably applicable to the pediatric age group tend to be unreliable in infants under 2 months.

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PLANNING, EVALUATION, AND RESEARCH 273 Typically, instruments are developed first for research purposes (which call for retrospective scoring of the severity of illness), and they may be quite sophisticated. Those intended for prospective clinical use come later and may not, at the outset, be as complex, reliable, or valid. Few if any global illness assessment scores can be used to predict outcomes reliably across the entire pediatric age span; even among the di$ea$e-specific m.ea- sures, predictability may not be high. Far less has been done to try to apply existing measures in any program evaluation or quality assurance effort. Thus, an appreciable amount of investigation and validation lies ahead to provide the EMS-C field with reliable and valid instruments related to illnesses across the pediatric age range that can be employed in research and evaluation activities. As with the trauma and injury measures, then, the committee concluded that this was an area warranting high priority in the research agenda proposed in the main part of this chapter.

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274 EMERGENCY MEDICAL SERVICES FOR CHILDREN Appendix 7B Emergency Medical Services for Children Proposed National Uniform Data Elements As is clear in the main text of Chapter 7, the Institute of Medicine study committee firmly believes that high priority must be given to collection and analysis of nationally comparable data at local, state, and national levels on emergency medical services for children (EMS-C). Data must be obtained from all phases of care for emergency conditions, including prehospital, emergency department (ED), intensive care and other inpatient services, and rehabilitation. The committee recognizes that, for data collection and analysis to succeed, a wide range of interested parties (e.g., health care providers, public agencies, hospitals, researchers, and administrators) will need to reach consensus regarding definitions and formats for specific data to be col- lected. Substantial work also remains to resolve many administrative and technical issues, such as determining which federal and state agencies will have responsibility for assembling and analyzing data or what electronic format will be used to store the data. The committee agreed that it was not the appropriate body to resolve these various issues. Instead, the committee sees its role as having three parts: to make clear the importance of data collection and analysis in the further development of EMS-C, to emphasize the need to establish an es- sential core of data to support important analyses, and to encourage indi- viduals and institutions to take action. The committee felt very strongly that getting started on defining a core data set and collecting data was critical. To that end, it has proposed an initial set of data elements for EMS-C, which is described in detail in this appendix. These data elements must be seen as a starting point for a more comprehensive data resource. In its discussions of these issues, the committee focused particularly on prehospital and ED care, believing that systematic collection of nationally comparable EMS-C data should begin with those settings. It then identified data elements that it believes ought to be part of a national data set. Several criteria guided the selection of specific elements, including utility of a data element for national and local analyses, adaptability to changing informa- tion requirements, ability and willingness of providers to capture accurate data, and availability of reliable and valid measures. The committee also considered whether evidence was available that data can be collected and used successfully without undue cost. Finally, it focused on the utility of this core data set for planning and evaluation purposes, rather than for research.

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PLANNING, EVALUATION, AND RESEARCH 275 The "priority" or "core" data elements are listed below along with com- ments reflecting the committee's reasons for selecting them or other obser- vations about the data element. In the case of E-codes, the formal recom- mendation made in the full report is noted. Also listed are two other categories of data elements "desirable" and "rejected" that the committee discussed but chose not to select' and annotations concerning the basis for consider at~on or rejection (respectively) are also given. General statements agreed to by the committee regarding the collection of these data are presented just below. SPECIAL CONSIDERATIONS Prehospital and Transport Services The committee advanced three broad principles to guide collection of these data in the prehospital setting. First, data should be collected on every call to which a prehospital provider responds, even if no patient is transported. Second, data should be collected from each ambulance (or other EMS unit) that responds to a request for assistance; coding schemes should be developed to make it possible to link separate reports on the same event. Third, data should be collected on interfacility transport provided by ambulance units; data on these transports should be distinguishable from prehospital transports. (The data elements relevant for interfacility trans- ports may differ from those presented below for prehospital reporting; the committee did not attempt to develop a list of data elements specifically for interfacility transports.) Emergency Departments The committee noted that several parameters that are markers for the physiologic status of the child should be collected routinely in EDs (even if they are not now so collected); they may then be helpful in comparing institutions, systems, regions, and states. These measures include the ele- ments of the Glasgow Coma Scale (GCS) and vital signs. The committee recognizes that problems exist at present in collecting these data reliably; for example, clerical personnel who routinely abstract data may not be familiar with the particular elements (especially of the GCS). A somewhat similar case is made for collecting certain kinds of zip code information as part of the prehospital data set. That is, even though such information is not now routinely collected by EMS agencies, it will be valuable for system evaluation, planning, and descriptive work, and the committee therefore advises that these data elements be included in routine data collection.

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276 EMERGENCY MEDICAL SERVICES FOR CHILDREN TABLE 7B-1 Data Elements Considered for a National Uniform Data Set for Emergency Medical Services for Children: Prehospital Services and Emergency Departments Prehospital Data Elements Data Element Basis ~r Se-lechon, Considerations or Rejection Priority Data Elements Date of Birth/Age Gender (M/F) Date and Time: Call for assistance (or EMS dispatch) Arrival on scene Departure from scene ED arrival Prehospital Assessment Spontaneous Breathing (YIN): On arrival at scene On arrival at hospital Spontaneous Pulse (YIN): On arrival at scene On arrival at hospital Level of Consciousness on Arrival at Scene (A/V/P/U) Alert Response to Voice Response to Pain Unresponsive Disposition: Left at scene Transported Transported to: Hospital identification number (Hospital zip code) Zip Code for Site of EMS Encounter Relationship of age to number and nature of emergency events and to outcomes; facilitate linkage between ED and EMS records; may not be routine part of current Prehospital data collection; the committee encourages use of date of birth, which is a better tool for record matching. Distinguish differences in types of emergencies (and therefore service needs), especially among adolescents. Calculate elapsed time in stages of Prehospital care; travel time can be an indicator of distances; ED arrival time can facilitate linkage between EMS and ED records. Time reporting is often retrospective; need to be aware of limits on accuracy. Nature of patient's condition (e.g., injury, illness, uncertain). State of breathing and pulse give an indication of acuity; deterioration or improvement on arrival at hospital. Indication of acuity, salvageability; use to assess destination choices and triage practices. Distribution of cases by action taken; assess relationship of acuity to disposition. Nature of destination ED (community hospital versus referral center); possible development of denominator data; facilitate linkage between EMS and ED records. A consistent national system; location of emergency relative to location of initial hospital care; analysis of transport and triage practices; location of events for prevention analysis; possible development of denominator data; can aid in matching EMS and ED records when location zip code is also home zip code.

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PLANNING, EVALUATION, AND RESEARCH TABLE 7B-1 Continued 277 Prehospital Data Elements continued Data Element Basis for Selection, Consideration, or Rejection Prehospital Services: Pros An humor Prehospital run report number Type of Responder (e.g., ALS, BLS) Desirable Data Elements Mechanism of Injury EMS Interventions Used Rejected Data Elements Vital Signs Loss of Consciousness or Conscious (Y/N/Uncertain) Dead on Scene/ Alive on Arrival at ED Resuscitation Needed Medical/Surgical/Other Facilitate linkage between ED and EMS records. Qualifications of responders. Good correlation with outcome; already part of trauma system and much EMS reporting; valuable for analysis of determinants of injury; appropriate response categories need to be defined before inclusion in a national data set. Appropriate response categories need to be defined before inclusion in a national data set; may not be possible to determine appropriateness of intervention use or nonuse; very important for local quality assurance/quality improvement activities. Not useful for aggregated analysis; may not be reliably collected in the field. Replaced as acuity indicator by level of consciousness on arrival at scene; potential for uncertainty in determination; requires careful specification of time of assessment. Acuity indicator; complications in determination of death (e.g., state before and after resuscitation); restrictions on EMT authority to declare death; significant regional differences in practices regarding declaration of death. Acuity indicator; based on judgment rather than objectively observable or measurable state. Nature of case; replaced by condition categories more appropriate for determination by EMS personnel. continued

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278 TABLE 7B-1 Continued EMERGENCY MEDICAL SERVICES FOR CHILDREN Hospital Emergency Department Data Elements Data Element Priority Data Elements Date of Birth Gender (M/F) Race/Ethnicity Mode of Transport (e.g., self, EMS, interfacility, air, ground) Date and Time of ED Arrival Date and Time of Discharge Disposition (e.g., dead on arrival; died in ED; discharged home; admitted; transferred) Diagnostic Codes (allow for reporting multiple ICD-9-CM nosology [or N] codes for each patient) Procedure Codes (allow for reporting multiple CPT-4 codes for each patient) External-Cause-of-Injury (E) Codes (allow for reporting multiple ICD-9-CM including site of injury) Glasgow Coma Scale (GCS) Components Verbal response ~ . Bye opening Best motor response Vital Signs (initial readings) Pulse Respiratory rate Systolic blood pressure Temperature Basis for Selection, Consideration, or Rejection Relationship of age to number and nature of emergency events and to outcomes; facilitate linkage between ED and EMS records. Distinguish differences in types of emergencies (and therefore service needs), especially among adolescents. Assess relationship to incidence and acuity (implications for access to other care). Distribution of cases by transport; relationship between transport and acuity; relationship between transport and outcome; appropriate response categories and criteria need to be established. Calculate length of time to discharge; facilitate linkage between ED and EMS records. Calculate length of time from arrival to discharge; relationship between time, acuity, and nature of a~spos~t~on. Distribution of cases by disposition; assess referral patterns; indication of acuity; identify cases to track for need/use of further services. Distribution of conditions presenting to the ED; indication of acuity. Hospitals may not currently be coding diagnoses and procedures if they do not bill for ED services; ICD-9-CM coding is often time consuming and imprecise; alternatives should be explored. Indication of acuity; appropriateness of care; resources and training used; accuracy of coding may be poor. Correlation with outcomes; assessing prevention needs and impact of prevention programs; committee strongly recommends universal adoption of E-codes. Acuity indicator; valuable research tool; application to children may need further refinement. Necessary element for TRISS analysis, so required for aggregated comparative analyses when adjustments for differences in patient injury severity are desirable; also useful for adjustments for illness severity (TRISS analysis is based on Revised Trauma Score and Injury Severity Score).

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PLANNING, EVALUATION, AND RESEARCH TABLE 7B-1 Continued 279 Hospital Emergency Department Data Elements continued Data Element Basis for Selection, Consideration, or Rejection IrtsurancelPayer Codes (e g^' self-pay, Med~caid,-publ~e assistance, CHAMPUS, private insurance) Prehospital services: Provider identification number Run report number Hospital Identification Number Hospital Zip Code Home Zip Code/Country Desirable Data Elements Date and Time of Physician Encounter Date and Time of Disposition Usual Source of Care (e.g., yes, no, not known) Communication Barriers Between Provider and Patient (or Family) Prior Health Status Rejected Data Elements Loss of Consciousness (history at time of arrival) Clarify impact A insurance status on ED a~ EMS use (actual and perceived costs; relationship to acuity, diagnosis, transfer, access to other care). Facilitate linkage between ED and EMS records. Characterize level of care available from ED (community hospital versus referral center); facilitate linkage between ED and EMS records. Assess area resources through other sources of data; possible development of denominator data. Facilitate other analyses: correlate area resources for family of patient; describe population characteristics of area; possible development of denominator data; relation of residence to location of initial emergency care; referral patterns; regional concerns regarding use of services by residents of other areas (counties, states, countries). Assess timeliness of care or transfer to more appropriate level of care in relation to acuity. Identify procedural delays between ED assessment or treatment and discharge or transfer to most appropriate care. Indicate access to routine care (i.e., a medical home); timing and acuity of visits when source of routine care is available; needs further study before being added to the recommended data elements. Clarify relationship with acuity, outcome; appropriate indicators need to be determined. Identify children with chronic illness or other special health care needs; appropriate indicators need to be determined. Acuity indicator; replaced by diagnostic and procedure codes.